Eubios Journal of Asian andInternational Bioethics
EJAIB Vol. 25 (2) March 2015
www.eubios.info ISSN 1173-2571
Official Journal of the Asian Bioethics Association (ABA)

Copyright ©2015 Eubios Ethics Institute(All rights reserved, for commercial reproductions).

Contents

page

Editorial: Scientific Responsibility- Darryl Macer

33

Hwang Woo-suk Scandal Reconstructed Based on
Mass Mobilization
34- Manjae Kim and Bang-Ook Jun
Teaching Ethics to Professional Scientists
38- Ann Boyd
The Principle of Autonomy, and decision-making differences
between American and Chinese Cultures
42- Yanguang Wang
Concept of “Treatmentalization”
45- Taka Fujii
Shortage of organ donation resulting from difficulties in the
diagnosis of brain death by medical practitioners in Malaysia- Nor Aina Mhd Khotib, Noor Naemah Abdul Rahman, 47
Shaikh Mohd Saifuddeen, Shaikh Mohd Salleh
Current debates on “Standard of Care” in Research on
Human Subjects in the Developing World50- Zoheb Rafique
Deficiencies in Japan’s Medical Ethics Review System 52- Akio Kanayama
A Re-examination of Organ Sale and its Challenges
57- Daniel J. Hurst

ABC16 Announcement and EJAIB Subscription

64

Editorial address (and all correspondence to:Prof. Darryl Macer, Ph.D., Hon.D.
Provost, American University of Sovereign Nations(AUSN), 8800 East Chaparral Road, Suite 250,
Scottsdale, Arizona, 85250 USA
Email: dmacer@au-sn.com
darryl@eubios.info
http://au-sn.com
http://www.eubios.info
Registered address of EJAIB: P.O. Box 16 329,
Hornby, Christchurch 8441, New Zealand

Editorial: Scientific ResponsibilitythThis 146 issue of EJAIB starts with the sad saga of Dr.
Hwang Woo-suk. I had the pleasure to be on several panels
at international conferences with Dr. Hwang, talking about the
ethical issues raised by cloning. Not known at that time was
the fact, that he later admitted, and was convicted for, that hehad falsified experimental data in some of his papers. He also
had used eggs from donors who could not provide free andinformed consent. The paper by Manjae Kim and Bang-Ook
Jun, exposes in five phases his public scientific career, andretreat from fame. Bioethicists in Korea played an importantrole in calling for review, and this is documented in the paper.
The next paper on “Teaching Ethics to Professional
Scientists” by Ann Boyd, explores how we might educate
young scientists not to follow the same paths that are
exposed by the famous examples of scientific fraud. Despiteover a decade of teaching research ethics to all graduate
students in USA, there are still significant examples ofunethical practices. The same fact of unethical science isseen globally. We need more evaluation of efforts to ensurethat scientists follow ethical guidelines and practices.
The concept of individual versus familial autonomy. anddecision-making differences between American and Chinese
Cultures is explored by Yanguang Wang. How much dopeople in different cultures view their public health anddisease in the lens of “Treatmentalization”? This is exploredby Taka Fujii. Rather than avoiding disease by our own
lifestyles to minimize disease, we often view our disease as
something simply to get a “bandaid” to fix. The paper calls fora more holistic and lifespan orientated view of health than thecurrent one.
The diagnosis of brain death is an issue which is stillcontentious in some countries, including in Malaysia asreported by Nor Aina Mhd Khotib et al. There is a need forcontinued and better education on this issue. Current debates
on “Standard of Care” in Research on Human Subjects are
discussed by Zoheb Rafique. A detailed case report including
falsification of medical records and failures in communicationin Japan’s Medical Ethics Review System is discussed by
Akio Kanayama. The particular case described is just the tipof an iceberg, as most cases do not get reported. The
questions of organ sale as discussed by Daniel Hurst. Thisissue is one that continuously returns to the bioethics table.
th
In 2016 the Asian Bioethics Association will hold its 16
Conference, in Boracay, the Philippines. This conference will
be an event and training from 4-8 November 2016, and werdask people to arrive there by the 3 November. We also will
ensure that amongst the plenary sessions, we also schedule
some free time for people to enjoy the Pacific ocean, orforests and nature. Significantly in the last few decade boththe US and UK government have dedicated large areas of the
Pacific Ocean as Nature Reserves. So have some of thesovereign states in the Pacific. It is also a good occasion to
discuss ocean and water ethics, along with all the usualissues of cross-cultural bioethics (see the back page).
The new ABA Board looks forward to meeting itself andmany readers there. This year is twenty years since the 1995
Asian Bioethcis Conference in Beijing, which lead to the ABA.
It will be the first time the ABC is held in the Philippines, so
we hope to see many colleagues there.
- Darryl Macer

34

Eubios Journal of Asian and International Bioethics 25 (March 2015)

Hwang Woo-suk Scandal
Reconstructed Based on Mass
Mobilization
1- Manjae Kim, Ph.D.
Department of Urban Planning and Real Estate, Gangneung-Wonju
National University, 210-702, Korea
2- Bang-Ook Jun , Ph.D.
President, Gangneung-Wonju National University, 210-702, Korea

Abstract
This article reviews the notorious Hwang Woo-suk scandal
based on a mass mobilization perspective showing three
features of mass-ness, cathartic expressivity, andcommunicative orientation through transmissions by the
media. Following the process of mass mobilization such as
period 1: the beginning of Hwang’s hype, period 2: the heydayof Hwang’s success, period 3: chaos, period 4: nationalturmoil and Hwang’s downfall, and period 5: final, it tries toshow how the cooperation among three actors including
Hwang, media and the Korean government appealed to the
Korean people’s emotions and nationalism in dealing with
science.
1. Introduction
Hwang Woo-suk became world-renowned in the field ofembryonic stem cell research after he published two articles
in Science (1, 2). Because he was perceived as a nationalhero, his fabrication of scientific data revealed in November
2005 tremendously shocked the whole Korean society. The
scientific fraud is nothing new in the history of science (3).
However, it is rare to find any comparable case with the
Hwang Woo-suk scandal in its impacts that a single scientificmisconduct can create.
It is well known that media and the Korean government aswell as the scientist himself were all responsible for thisscandal. Media received Hwang’s claims without any
substantial data, and mythified him as a figure to conquer
incurable diseases (4) and to bring South Korea
immeasurable economic prospect from his promisingresearch (5). The Roh Moo-hyun government suffering fromthe lack of popular support promoted an exemplary policy
success by backing up Hwang (6). Until the very last moment,
president Roh affirmed his unflinching support for Hwang (7).
This paper claims that the cooperation among three actors
including Hwang, media and the Korean government resulted
in mobilizing the public to believe the rosy future by appealing
to the Korean people’s emotions and nationalism rather thanto scientific rationality. As a result, even when the evidencesof deception revealed, the public resisted to believe scientificfacts. Some frantic followers demonstrated to defend Hwang.
Since a final court decision was made nine years ago, themovie, Whistleblower, based on the Hwang Woo-suk scandal,
was made and was a box office hit in 2014. It has taken
almost a decade for Korean society to reconstruct thissensational social hypnosis in a mass friendly form.
2. Mass mobilization
Mass mobilization is historically utilized by facists to win
popular support and consolidate their power. Facists usedmass meetings, parades and other gatherings to create
patriotic fervor, and appeal to people’s emotions rather than
to their reason (8).

1Part of this paper was presented at the 2006 Annual Meeting of 4S,
Vancouver.
2
Corresponding author

In some democratic countries, mass mobilization issometimes called a demonstration. In spite of relatively
weakened fanatic enthusiasm, it still shows three features ofthe mass mobilizations, its mass-ness, its cathartic
expressivity, and its mediated, communicative orientation (9).
More specifically speaking, it first visibly demonstrates that alarge number of people share a common political sentiment.
Second, the event must have ‘energy’-and preferably a lot of
it-to engage emotionally both the people who are there andthose who are watching at home. Lastly, the communicative
impact of the message and the ‘energy’ is realized throughtransmissions by the media, so the event’s form must be
mediagenic.
Therefore, social movements need to be situated in a
dynamic relational field in which the ongoing actions andinterests of diverse all influence social movement emergence,
activity and the outcomes (10).
3. Hwang’s scandal
Hwang Woo-Suk was a professor of theriogenology andbiotechnology at Seoul National University (dismissed on
March 20, 2006). He rose to a national hero after claiming aseries of remarkable breakthroughs in the field of stem cellresearch. His works were best known for two articles
published in Science magazine in 2004 and 2005. However,both papers have been editorially retracted after being foundto contain a large amount of fabricated data (11).
4. Process of mass mobilization
Hwang’s scandal reconstructed into five periods reveals
how Hwang, the Korean government and media haveemotionally affected the Korean people at the beginning andcounter groups including “PD Notebook” and rational
scientists confronted manipulations at Hwang’s papers in thelate period.
Period 1: The beginning of Hwang’s hype (Feb 1999 – Jan
2004)<Hwang>Hwang began to receive media attention as he announced
that he succeeded in creating a cloned dairy cow in February
1999 (12). He failed to provide scientifically verifiable data forthe research, giving only media sessions. After two months,
he again claimed the success of cloning a Korean cow
without scientific evidences (13).
During this period, Hwang’s research areas remained increating genetically-modified livestock and claimed several
scientific achievements which were not verified, and promised
cloning some other animals including a Siberian tiger to getsensational attention (14).
Hwang also sought to establish a tie to political andeconomic institutions. He approached Park Ki-young who was
appointed as the Information, Science and Technology
Advisor for the President, and put her as one of the coauthors in his 2004 Science paper. Through ties with Park, he
could build a favorable environment in the government,
including Kim Byung-joon, Chief National Policy Secretary,
and Jin Dae-jae, Information and Communications minister(15).
<Media>Hwang’s several claims were well received by the media
attracted by Hwang’s claim of immeasurable economic
prospect. With the lack of professional reporters in the field of
science, the media delivered Hwang’s own words without anyother verification (16).

Eubios Journal of Asian and International Bioethics 25 (March 2015)<Government>
Hwang presented a report on his recent successful cloningof a cow to President Kim Dae-jung as a part of major statefunded research and development projects (17). But it wasfrom the Roh Moo-hyun government that Hwang especiallytried to win favor. Suffering from a lack of popular support,
President Roh wanted to demonstrate his competency bycreating and promoting an exemplary policy success. For thispurpose, the government decided to promote thebiotechnology as a key growth engine of the next decade (5).
<People>People were exposed to positive media reports about
Hwang. However, his self claimed achievements were notsufficient enough to move people emotionally.

Hwang

Gov’t

Media

▪ Hwang announced cloning
success only in media sessions.
Hwang established a tie to politicaland economic institutions.
▪ The media delivered Hwang’s
own words without any otherverification.
▪ The government promoted thebiotechnology as a key growthengine of the next decade.
▪ Hwang’s achievements were notsufficient enough to move people
emotionally.

PeoplePeriod 2: The heyday of Hwang’s success (Feb 2004 – Oct
2005)<Hwang>While much of Hwang’s previous work conspicuously lacked
any supporting paper, his studies were published and were
hailed as a major advance in the field during this period.
First, Hwang and his team announced that they had
successfully created the world’s first human embryonic stem
cells from cloned human embryos in February 2004, andpublished their paper in the March 12 issue of Science (1).
Hwang’s team again claimed to have developed the world’s
first human embryonic stem cells tailored to match the DNA ofindividual patients (2). The results were published in Sciencein May 2005. According to Hwang and many other scientists,
it would be possible to use stem cells to generate healthy
tissue to replace that either damaged by trauma orcompromised by disease (18).
Hwang was appointed to head the new World Stem Cell
Hub, a facility that was to be the world’s leading stem cellresearch center in October 2005 (19).
Hwang’s team succeeds in developing Snuppy, the world’s
first cloned dog. The work was published in Nature in August(20).
<Media>During this period, too, the media continuously delivered
Hwang’s words faithfully (21). Although they reported ethicalquestions raised by the Nature, they were not interested inmentioning any negative remarks about Hwang (22). Hwang
was a rare scientist who could explain his research inordinary words, and provide visions and dreams (23). The
media were eager to mythify him for his tireless devotion to35

his research. Hwang’s remark the he and his team’s weekly
work schedule consisted of “Monday-Tuesday-WednesdayThursday-Friday-Friday-Friday” decorated headlines (24).
Through the media, Hwang was reborn as an untouchable
world famous national hero (25).
<Government>
After Hwang’s so-called groundbreaking paper was
published, support for Hwang came in full swing. The
government launched a pan-government task force tofinancially support Hwang. Hwang was registered as animportant national figure and guarded by police and state
intelligence agents. In June 2005, the Ministry of Science andTechnology selected Hwang as the first recipient of the title
Supreme Scientist, and honor worth US$15 million (26). The
national post office issued post stamps commemorating
Hwang’s success (27).
President Roh made a number of comments intended toprotect Hwang from potential bioethical issues, “It is notpossible nor desirable to prohibit research, just because there
are concerns that it may lead to a direction that is deemed
unethical” (28). “Politicians have a responsibility to manage
bioethical controversies not to get in the way of thisoutstanding research and progress” (29).
<People>People consider Hwang as a national hero. Especially tothose with incurable illnesses or their family members, Hwang
was their hope and reason to live (25). Private companies andindividuals poured donations for Hwang’s research. Korean
Air Co. provided Hwang with complimentary travel on any of
its domestic and international routes (30).
Although some religious organizations and experts inbioethics voiced opposition to the cloning research onembryos performed by Hwang, most people shared theemotional excitement, and were proud of him for his patriotic
achievements (25).

Hwang

Gov’t

Media

People▪ Hwang’s studies were publishedand were hailed as a majoradvance in the field▪ The media portrayed Hwang as aworld famous national hero.
▪ The governmental support for
Hwang came in full swing .
▪ President Roh made a number ofcomments intended to protect
Hwang from potential bioethicalissues. 	 
▪ Most people shared theemotional excitement, and were
proud of him for his patriotic
achievements .

Period 3: Chaos (Nov 2005)<Media>During this period, the media were sharply divided. On one
hand, “PD Diary”, a popular MBC-TV investigative reporting
show, raised the possibility of unethical conduct in the egg
cell acquiring process, which was the first media attempt
questioning Hwang’s ethical violation (31). On the other
hand, despite the factual accuracy of the report, other media
still showed unwavering support for Hwang (32).

36

Eubios Journal of Asian and International Bioethics 25 (March 2015)

As a wave of campaigns to save Hwang from an ethics
scandal swept the nation, the MBC television network faced
sharp criticism and financial losses (33).
<Hwang>Until November 2005, Hwang was criticized only for
unpublicized ethical violations. During this period, however,
Hwang encountered an obstacle that he had paid female
donors for egg donations and that he had received donations
from two junior researchers, both of which were violations.
First, Gerald Schatten, a U.S. professor at the University ofPittsburgh and a partner in Hwang’s research, said he had cut
all ties with Hwang out of suspicions of unethical research
conduct on Nov. 13, 2005 (34). Following an intense media
probe, Roh Sung-il, one of Hwang’s close collaborators andhead of MizMedi Women’s Hospital, held a news conferenceon November 21, admitting that he compensated donors of
the ova used in Hwang’s stem cell research, while stressingthat Hwang had no prior knowledge of this (35). Next day,South Korean TV network MBC broadcasted a program that
included strong evidence that Hwang’s team had used ova
extracted from its junior researchers (31).
On November 24, Hwang admitted to ethical lapses andannounced that he would resign from all public posts.
However, he denied coercing his researchers into donating
eggs and claimed that he found out the situation only after it
had occurred (36).
<Government>
The government did not take any action. A top official of
Korea rebuffed a claim by the Nature, which urges thegovernment to launch a probe into how Hwang obtained eggs
for his stem cell research (37). In spite of Hwang’s ethicalviolation, President Roh continuously backed up Hwang byexpressing his concern over the society’s lack of tolerance
(7).

Hwang

Gov’t

PeopleMedia

PD Diary▪ The media were sharply divided
on Hwang’s ethical lapses(MBC PD Notebook ↔ Other Media)▪ Hwang admitted to paid andcoerced donation, and announced
that he would resign from all
public posts.
▪ The government did not take any
action.
▪ President Roh continuously
backed up Hwang by expressing
his concern over the society’s lackof tolerance.
▪ Hwang’s on-line supporters
aggressively attacked MBC-TV.

<People>Many speculations accumulated around the US scientist’s
withdrawal from the joint cell project with Hwang. Some
conjectured on a conspiracy theory that the US wanted toblock another country from taking the initiative in an importantscientific and technological field (38).
Everyone more or less operated under the assumption that
the MBC show was at fault and not Hwang. People were
mobilized to assert that criticism of Hwang’s work was
unpatriotic. Hwang’s on-line supporters aggressively attacked
MBC-TV. The MBC site was inundated with thousands of hatemessages. After the program was aired, some demonstrated
in front of the network headquarters. As a result, the major

companies who sponsored the show had to immediately
withdraw their support (39).
Sympathy for Hwang resulted in an increase in the numberof women who wanted to donate their eggs for Hwang’s
research (40). Over two thirds of those responded to the
Korea Times’ online poll said they would continue supportingstem cell pioneer Hwang, irrespective of the recent ethicalcontroversies involving his research. A majority of Koreansthought little of Hwang’s ethical breaches and paid attention
only to Hwang’s achievements (41).
Period 4: National turmoil and Hwang’s downfall (Dec 2005)<Media>PD Notebook planed to air its second report on the “myth” of
Hwang as soon as possible, this time focusing on validity ofthe patient-specific stem cells (42). However, the all-news
cable channel YTN televised that one of Hwang’s researchers
from MizMedi was coerced by illegal means to testify against(43). The scheduled broadcast was canceled and MBC-TV
had to make a public apology to the nation. MBC confronted
the most serious crisis since its establishment, making adecision to put weekly news magazine “PD Notebook” on holdindefinitely (44).
<People>While some began to denounce Hwang’s research,
Hwang’s loyal supporters participated and showed moreaggressive mobilization than before on-and off-lines. A
website backed by Hwang’s supporters began taking eggdonation pledges online. Hundreds of South Koreans offeredto donate eggs for stem cell research in a show of support for
Hwang despite his admitted ethical breaches. Members of an
online community “I love Hwang Woo-suk” queued up next toa road of azaleas from the entrance of the Seoul National
University’s veterinary medicine college building to Professor
Hwang’s office to symbolize their wishes for Hwang’s return(45).
<Internet groups of scientists>
By contrast, the internet groups of scientists questioned theauthenticity of the stem cells, including BRIC (BiologicalResearch Information Center), SCIENG (Scientists andEngineers’ community) and DC Inside Science Gallery. A
member of BRIC, a website dedicated to biologists, first
discovered the discrepancies in DNA analysis data in
Hwang’s paper and made them public. Other members
followed suit, uncovering the fact that many photos presented
in the paper were also fabricated. The Science Gallery of DC
Inside, a website for digital camera enthusiasts, also
contributed to the revelation of Hwang’s misconduct bydiscovering more problems in the paper and pointed out
fallacies in Hwang and his supporters’ claims. Because theseon-line boards were operated anonymously, contributors
could express their opinion freely. Furthermore, members’comments were too professional for Hwang’s supporters to
attack. Young scientists played a pivotal role in pinpointing
manipulations at Hwang’s papers (46).
<Government>
The Ministry of Health and Welfare denied Impropriety of
Hwang’s research and President Roh expressed his supportfor Hwang, saying that “We’ll continue to support Professor
Hwang. We hope he will return to his research lab soon forthe sake of people with physical difficulties and the public.” (7)<Hwang>During this period, Hwang was accused of scientificmisconduct. The scandal took a dramatic turn on December
15, when Roh Sung-il, who collaborated on that paper, statedEubios Journal of Asian and International Bioethics 25 (March 2015)37

to media outlets that nine of eleven lines had been faked;
specifically, DNA tests illustrated that those nine lines shared
identical DNA, implying that they had come from the same
source. Roh stated that “Professor Hwang admitted tofabrication,” and that he, Hwang, and another coauthor had
asked Science to withdraw the paper (47).

accused Hwang of oddities in his research on 22 November
2005. Their last show of the year on November 29 covered
other topics. It remained off the air for 5 weeks (11).

<Seoul National University>
Junior researchers at Seoul National University (SNU)
urged the school’s panel to conduct an inquiry. SNU
appointed a committee to investigate whether there was
misconduct in stem cell research carried out by Hwang (48).
The SNU investigative panel determined that the productionof nine patient-tailored stem cell lines was a fabrication (49).

▪ Hwang held a press conference
to apologize for the entire fiasco .
▪ Among top officials, no one took
any responsibility for financially
supporting Hwang’s projects.
▪ Hwang’s supporters continue tourge Hwang to restart his researchand the South Korean government
to acquire a patent on the firststem cell line.
▪ “PD Notebook” returned to the
air and the other media regreted
their ethical negligence.
▪ Hwang and the other coauthors
had asked Science to withdraw thepaper.

Hwang

Gov’t

Media

People

Hwang

Gov’t

PeopleScientist▪ PD Notebook planned to focus onvalidity of the patient-specificstem cell.
▪ While some began to denounce
Hwang’s research, Hwang’s royalsupporters participated in showedMedia
more aggressive mobilization than
before on-and off-lines. .
▪ Young scientists played a pivotal
role in pinpointing manipulations at
Hwang’s papers.
▪ The government denied
PD Diary Impropriety of Hwang’s research▪ Hwang and the other coauthors
had asked Science to withdraw thepaper.

Period 5: Final<Hwang>On 12 January 2006 Hwang held a press conference toapologize for the entire fiasco, but still did not admit tocheating. Instead, he explicitly put the blame on othermembers of his research project for having deceived him withfalse data and alleged a conspiracy, saying that his projects
had been sabotaged and that there was theft of materials
involved (11).
Hwang was indicted on 12 May on charges of fraud,embezzlement, and violations of the Korean Bioethics Law.
Five other members of his team have also been indicted,
three on fraud charge, one on a bioethics law violation, andone for destroying evidence and obstructing business
operations.
In addition to research misconduct, theprosecutors claim Hwang misappropriated USD2.99 million instate funds and private donations (50).
<Government>
The government says that it will try to retrieve the grantmoney given to Hwang and his lab at Seoul National
University. Among top officials, no one took any responsibility
for financially supporting Hwang’s projects (51).
<People>Hwang’s supporters continue to urge Hwang to restart his
research and the South Korean government to acquire apatent on the first stem cell line. Hundreds of Hwang’s
supporters gathered in front of the prosecutors’ office,protesting Hwang’s indictment (52) .
<Media>The investigative journalism show “PD Notebook” returnedto the air on January 3, 2006 and summarized the course of
Hwang’s scandal until that day. The show had been cancelled
in retribution after it aired its momentous show that correctly

5. Conclusion: mobilization and science
Hwang’s scandal portrays all three characteristics
mentioned earlier.
1)
mass-ness: Since period 2, almost all Koreansshared a common sentiment believing in Hwang.
2)
emotional expression: Whenever Hwang as
criticized, his supporters mobilized all resources to protect
him. They refused to hear and understand evidences against
him to the very last moment. They asserted that any criticismof Hwang and his work was unpatriotic.
3)Media: Media played an important role in making thescientist a national hero. The media glamorized the story,
appealing to the emotions and patriotism of the people,
fueling hopes that his research may truly bring about magic.
Besides these three, this case is unique in terms of its
heavy dependence on the internet. Although Hwang’s
supporters sometimes demonstrated in a traditional way,resource mobilization through on-line was widely usedregardless of people’s different opinions. Especially internet
groups of scientists solely depended on on-line boards.
To conclude, people’s emotional demonstrations andactivist movements were results of the “media play” of thethree parties: Hwang, government, and media. Ironically,
however, it was media that confronted three allies andextricated the Korean people from irrational massive hype.
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Campaign for Hwang sweeps nation. Korea Herald.
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34)
US researchers pulls out of partnership with Hwang Woothsuk. Korea Times. November 13 , 2005.
35)
Hwang’s stem cell team paid for eggs. Korea Times.
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36)
Hwang Woo-suk resigns from all official positions. Korea
th
Herald. November 25 , 2005.
37)
Roh advisor rebuffs Nature’s attack on Hwang. Korea
thTimes. November 19 , 2005.
38)
Don’t speculate about Schatten’s decision. Korea Times.
thNovember 16 , 2005.
th39)
Don’t shoot the messenger. Korea Times. November 27 ,
2005.
th
40)
New takeoff of research. Korea Times. November 27 ,
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41)
2 in 3 Koreans back Hwang: Poll. Korea Times. Novemberrd23 , 2005.
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MBC threatened Hwang’s staffer. Korea Times. Decemberth4 , 2005.
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45)
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thDecember 6 , 2005.
46)[interim results of the report on Hwang’s research] “Youngrdscientists did a great job” Seoul Economy. December 23 , 2005.
(in Korean)
47)
Hwang faked stem cell research. Korea Times. Decemberth
15 , 2005.
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SNU panel set to probe Hwang’s work. Korea Herald.
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Hwang fabricated his research. Korea Herald. Decemberth24 , 2005.
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thDecember 5 , 2006.

Teaching Ethics toProfessional Scientists- Ann Boyd, Ph.D.
Hood College, Frederick, MD USA
Email: boyd@hood.edu

Abstract
Supporting the view that ethics can be taught, this paper
will explore the frequent lack of a philosophical foundation inscientific training and its impact on a course on ‘Science andethics.’ The incidence of cases of misconduct by scientists
engaged in basic research led the United States to establish
the Office of Research Integrity. Their publication,“Introduction to the Responsible Conduct of Research” covers
the ethical conduct of research and defines misconduct asfabrication, falsification and plagiarism. Concern for breach of
public trust with repercussions in scientific funding has led to
mandates courses in ethics for students training for scientificresearch careers. Having concentrated their course work inlaboratory-based science, these students have less familiarity
with philosophy and consequently struggle with the ethicalreasoning aspects of a course in science and ethics.
Discovery of a therapeutic drug or device opens a complex
web of regulations by Food and Drug Administration for the
ethical use of human subjects. Again the ethical system is
one of rules and conduct based norms without foundational
philosophical support for the ethical principles used in theguidelines. Rules of law reflect corrective action. Engaging
students in case studies helps alert them to potential ethicaldilemmas and invites them to explore why one action is right,
good or better than an alternative. Narrative ethics provides ahuman presence to competing and compelling claims, theintersection of which is the ethical issue and concept.
Dissection narratives help students explore how ethics can betaught and learned in a pluralistic society and remain relevantto the field of expertise they have chosen. The challenge lies
in finding the best methods for teaching ethics in a particulardiscipline. Is there a code of ethics that applies crossculturally and across disciplines? Early and often should be
the mantra of teaching ethics throughout the development of
the individual and emergent professional.
Introduction
Graduate students who work in scientific research or
related biotechnology jobs are trained in the scientific method,
critical thinking, and analytical skills which help them inlaboratory based studies. Controlling for variables and being
open to affirmation or rejection of the working hypothesis isEubios Journal of Asian and International Bioethics 25 (March 2015)
central to the scientific method. Concentration on foundationand elective courses to build laboratory skills may result in aminimal number of electives in the humanities such aspolitical science, history, or philosophy.
The United States Office of Research Integrity (ORI) was
founded in 1989 to reduce instances of scientific misconduct
under the auspices of The Public Health Service (PHS). A
training document was released containing exercises to use
with students to prevent misconduct (Steneck, 2000). The
government requires that every institution receiving PHS
funding have procedures to handle allegations of misconduct.
Academic institutions receiving government funding are
required to train scientists in proper conduct, with the aim of
reducing the incidences of scientific misconduct (fabrication,
falsification and plagiarism). This mandate has translated into
various courses on “research ethics.” I offer a graduate
course within the Master of Science Program in Biomedical
Science entitled “Science and Ethics.” Having taught thiscourse in various permutations for over fifteen years tohundreds of students, I extract from this experience somebroad implications for teaching applied ethics.
What is ethics?
For the purposes of this paper, ethics is a decision making
paradigm that relies on philosophical foundations about what
is good for individuals and communities. As a branch ofphilosophy, ethics focuses on right action, or a reasonably
justified action that is at least as good as any alternative
action. Aided by a set of rules, principles, norms and values,
ethical reasoning imagines alternative actions for a given setof circumstances, discerning among the options the better orbest of the alternatives. Ethics as moral philosophy analyzes
concepts such as goodness and moral truth. An ethicalchoice is acceptable to the larger community and based on
culturally accepted norms and values and may become
codified in guidelines or laws (Penslar, 1995).
It may be that people develop a sense of right and wrong
early in life, during childhood at the instruction of parents andelementary school teachers, or so students often assert. If it
is true that every person develops a moral compass alongwith strong bones and muscles, ethics education would be
purely academic and unnecessary. However, if one does notinherit a moral code, or acquire one naturally in the course of
primary education, then ethics must be taught and thepregnant question is how to teach ethics in professional
disciplines.
The danger addressed by the ORI for awareness andprevention of misconduct is appropriate because scientificresearch is a matter of public trust. It is a challenge totranslate complex scientific knowledge into useful terms forthe good of the public. If and when data is manipulated forindividual or corporate gain or misconduct pollutes truth andtrust, the public becomes skeptical of the results andpotentially of scientists.
Research ethics is not limited to biology but is the domain
of investigation – search for knowledge in any discipline.
Plagiarism is relevant for all writers. Conflict of interest is not
exclusive to science or scientists. We live in a time when
information is available at our fingertips through numerous
electronic devises. Assigning proper credit to an idea or
person is important for every author. The speed and easy
access to information today may so flood our senses that it ismore likely we will neglect to recognize and attribute oursources.
A set of professional ethical norms or rules directing
behavior should reflect the cultural values of the society
unless we allow diverse disciplines to create their own ethics
norms, which pushes the ethical relativism card to the limit
and risks loss of all social cohesion. Listening to students

39

over the years has alerted me to the fact that social forces
shaping our ethical norms are strong but individual students
who are aware of their own strong desire to succeed
acknowledge the counterweight of wealth, fame and power.
Students often appeal to a relative or situation sensitive
analysis. If the norms that guide behavior are relative to
culture and/or discipline, the emergent problem is that we losea sense of the commons as the social good within which
individuals flourish. If students are strong proponents of
ethical relativism, they find practical ethics, as the norms of aprofessional praxis, unpersuasive. This raises the question:
can ethics be taught, generally, and if so is there any
difference when the students are already engaged in a
professional discipline?
One way to look at teaching is to think of conveying
knowledge from generation to generation. Systems of morality
are collective acquisitions, built up in various cultures overmillennia. Emphasized in social units such as family,
schoolrooms, and beginning with the simple maxims e.g. lying
and stealing are wrong, such values are communicatedbetween generations. Social norms or values aim at socialand moral order. “Bioethics is a universally important subject,fully consonant with a liberal arts and science education, andas such it should not be taught first, let alone only, at the
professional level” (Lee, 2013).
It may be that there are graduate students in science whohave never given much thought to the moral aspects of their
behavior. If we have a pessimistic attitude about humannature, we may rely on regulations designed to correct andprevent misconduct. When rules become guidelines those
who adhere to them must recognize their value, or at least
accept the punitive impact of infringement. Compliance as
obedience to the rules can give a false sense of safety,
especially if the ethical reasoning grounding the rules is notapparent or understood. Asking why is a central tool of ethicalreasoning.
For the daring professor of science and ethics there aretools available and it may be important to not overstate one’s
goals. One course in genetics will not make a student a
professional and productive geneticist, nor will one course in
ethics make students ethical for life. What one course can do
is explore the range of positions a scientist may find herself induring a career, especially one with divergent paths each ofwhich may carry unique ethical challenges. Teaching anddoing research differs widely between the research conductedin academia and that done for a private firm. Students maylearn from a mentor about the subtle points of data recording,analysis, reporting, authorship, peer review and funding.
Company codes may require different formats for data
recording and have restrictions on proprietary information
about when and if it can be published. Practicing scientists
are ideally suited to sharing with those in training the various
demands, pressures, temptations, and advantages toscientific conduct that promotes integrity and success(Penslar, 1995).
Reducing cases of misconduct in Science
It may be that cases of misconduct are reported more
frequently as a result of increased awareness born ofresearch ethics courses. David Wright, director of the ORI,
reported that in 2012 more than 400 allegations of scientificmisconduct were received, double the number from thepreceding year (Wright, 2013). Among students expected to
study ethics – science students for example – current
education is not meeting expectations. Responsible conductof research (RCR) promoted by the ORI through training
courses describe forms of research misconduct. It would be
difficult to show that such a course reduces misconduct whichis reported at the rate of one incident per 100,000 scientists

40

Eubios Journal of Asian and International Bioethics 25 (March 2015)

per year (Plemmons, 2006). While the goal of reducing
research misconduct may be hard to document other goals
are measurable, such as knowing the expectations set forth in
the guidelines.
A study conducted to explore how common misconduct isamong U.S. scientists revealed that over 33% of the several
thousand scientists surveyed admitted to one or more formsof misconduct. For example, 15% dropped data points froman analysis on the basis that they had a gut feeling the data
points were inaccurate; 15% changed the design,
methodology or results of a study in response to pressure
from a funding source; and 10% said they inappropriately
assigned authorship credit (Martinson, 2005). Martinson’s
survey data suggests more misconduct is taking place than iseither reported or recognized and it is this reality that courses
in science and ethics are designed to correct.
The high profile misconduct cases such as the hoax that
the MMR vaccine (measles, mumps, and rubella) is
associated with autism garners so much attention that there isa risk of not paying attention to “minor” cases of misconduct(Wakefield, 1998). Despite the fact that 10 of 13 authors
retracted their interpretation of the findings in the Lancet
article, the association continued to be accepted by parents
resulting in lower vaccination rates of children. The General
Medical Council of the UK ruled that Wakefield had acted
unethically and Lancet retracted the paper. The British
medical Journal’s editor in chief said in a news release: “TheMMR scare was based not on bad science but on a deliberate
fraud. Such clear evidence of falsification of data should now
close the door on this damaging vaccine scare.”
What is the current rate of MMR compliance? CDC
reported on vaccination coverage among kindergarten
children in the U.S. in the school year 2011-2012 that MMR
vaccination was 94.8% among 47 reporting states. While theoverall vaccination rate is good, local areas where vaccination
rates were lower experienced 17 outbreaks of measles with222 cases among unvaccinated persons (MMWR/CDC,
2012). It is true that measles is a childhood disease fromwhich most children recover without harmful consequences,
but not all. Humans are the only reservoir of the virus with
30-40 million cases per year globally with 1-2 million deaths.
The vaccine (MMR) is effective (In 1941 there were 894,134
cases of measles in the US, and in 2013, 113 cases with 99%of those cases occurring in unvaccinated children). There areseriouscomplicationsofprogressive
neurologicaldegeneration albeit rare, but severe enough to justify thevaccine. Measles is the leading cause of vaccine-preventable
deaths in children less than five years of age. It is regrettablethat parents think they have to choose between trusting avaccine to protect their child against a viral infection andtrusting a scientist to warm them of harm from that vaccine.
The deceptive linkage of vaccination and autism
demonstrates how integrity in science is vital to public trust.
Sadly the media amplification of the study made it difficult tocorrect when the hoax was revealed and corrected in thenormal process of peer review. Retraction by the authors of
the Lancet article did not reach the attention of the media or
the parents who were inclined to not vaccinate their children.
If only a few in a community are not vaccinated, collective
immunity protects the few who are vulnerable. This example
illustrates why science and ethics should be taught.
Course format
Courses designed with an emphasis on case analysis anddiscussion among participants consistently shows stronger
understanding of the norms of ethical conduct, over a moredidactic approach (Brown, 1998, Plemmons, 2006, Powell,2007). One published study surveyed students about theirperspectives after completion of one of eleven different

research ethics courses at ten different institutions.
Undergraduate and graduate students enrolled in thesecourses. The students received a voluntary anonymous
survey from their instructor after completing the course.
Seventy-seven percent of open ended responses listed kindsof information learned, with 75% of the respondents notingthat the course was useful in preparing them to recognize,
avoid and respond to research misconduct. The majority
reported better understanding of what was expected but nosignificant impact on their individual attitudes (Plemmons,
2006). These results suggest that such courses increaseawareness but raise the important question of whether
awareness converts to more ethical conduct.
Plemmons and Kalichman surveyed 50 RCR instructors
from 37 different institutions about their goals for teachingskills in their courses. Responses varied widely, “from a focus
on teaching the skill of ethical decision making to theperceived importance of ensuring that trainees understandthe importance of the community in some research
relationships” (Plemmons and Kalichman, 2013). The
responsible conduct of science requires diverse skills: theability to conduct research, design experiments, record data,cite resources, write papers, manage stress, and have theability to recognize ethical issues and make ethical decisions
based on moral reasoning. It is difficult to measure all theseskills and course objectives aiming at them. Results of thesurvey by Plemmons and Kalichman suggest that “ethicaldecision making” and “critical thinking” are skills given highest
importance in the RCR courses taught by the respondents,
but teacher expectations varied widely. Interestingly many of
the respondents expected students to have critical thinking
skills prior to their RCR course. In answer to “what goals do
you have for teaching the skill of ethical decision making?”
one respondent answered “none” (Plemmons and Kalichman,2013).
Ethics for a career in science
The content of my course, Science and Ethics, has
evolved from focusing on the misconduct ORI material to an
expanded effort to cover various ethical challenges atdifferent stages of a scientific career. A scientific career may
diverge from basic research into clinical trials involving humansubjects. A scientist may be asked to serve on an ethics
review committee, or be a peer reviewer for a journal or
funding agency. Each of these stages in the development andpractice of the profession have ethical relevance. The course
therefore includes sections on career choices, and ethicalintersections at various stages of professional development.
Knowing that I, the teacher, cannot follow students throughout
their careers, it is my intent to provide an ethical toolkit to takealong on their journey.
The first segment deals with proper conduct, why
misconduct is harmful to one’s own career and potentiallydamaging to science and society. A series of cases
illustrating why and how to maintain data records, ways toretain an objective perspective in data analysis, shared
responsibility in assigning authorship in publications, journal
expectations about peer review and the scientific community’strust in peer review to certify and validate the integrity of
research findings. It is important that students pursuing acareer in science understand why misconduct is harmful tothem individually and to the larger realm of scientificknowledge. Cases in which the student can relate a question
posed about what should or should not be done help clarify
the nuances of plagiarizing ideas and concepts, who andwhat to attribute, as basic norms of honesty and trust.
Stress may be the primary cause of misconduct and an
ethics course will not remove career stress, but awarenesscan help students create ways to deal with it. A commitment

Eubios Journal of Asian and International Bioethics 25 (March 2015)
to the overall value of science for the public good, the trust
the public places in scientists to advance medicine andtechnology for the benefit of life can help counter-balance
temptations to falsify data, adjust experimental protocol, or
yield to external pressure. Teaching students to take time to
get an objective and fresh look at a situation and discuss thesituation with a dialogue partner can help. The benefit ofconversation is modeled in small group discussion of cases
followed by having each group feedback their decisions,where they had agreement, where they disagreed, what theylearned from one another, and if anything in the case scenario
surprised them. Comparing and contrasting the feedback
from a collection of cases carefully chosen to represent thesituations that could lead to misconduct helps increaseawareness and helps students articulate what they should doin such situations.
A guideline set of rules or norms for proper conduct of a
research scientist seems straightforward – almost intuitively
obvious. Rules of conduct are like steps in the protocol of anexperiment as a step by step instruction in what to do andwhen. Students struggle with the why questions: why should
all the data be reported? Why must all contributors be cited?
What value does negative data have for scientific progress?
These questions require more thoughtful reflection andreasoning, which often causes frustration.
Case study and narrative help hone the student’s
understanding of ethical reasoning in the context of scientificpraxis. It may be difficult to wedge a book on justice into asingle course on ethics and science, but it is simple toconstruct a narrative about selective authorship on a
publication. A student who works hard to gather data andfinds himself omitted from the authors of the resulting paper
will immediately see that the practice was unfair. It may bedifficult for a student to understand why throwing out somedata believed to be a product of experimental error is wrong
until the larger problem of not reporting negative data resultsin harm or misdirection in research. I use selected cases from
“Case Studies in Biomedical Research Ethics” by Timothy F.
Murphy (2004) with a variety of examples of study design,
conflict of interest, authorship and publication, and social
effects of research.
In a second section of the course, I compare the norms ofresearch with the guidelines for clinical research, because a
research scientist would be very happy to have a discovery
proceed to a therapeutic intervention. Should the scientist
desire to shepherd the drug or vaccine through clinical trials,
an entirely new set of ethical norms and regulations emerge.
Many of these regulations are born of historical cases ofsubject abuse….what could be described as clinicalmisconduct. Reading about cases that failed to consent
participants, or trials designed with a placebo when a proventherapeutic drug was available but unaffordable in thegeographical context of the trial, helps students identify why
the guidelines stress informed consent as respect for theparticipants as persons, why the risks and benefits for theputative subject should be ethically evaluated in the design ofthe trial and why inclusion and exclusion criteria can limit
access (justice) or so circumscribe data obtained that generalapplicability, safety and efficacy is limited to those who fit thetest subjects profile. Small groups of students discuss avariety of cases and their feedback as with the cases on
misconduct in research, are reported to the entire classgenerating broader discussion (Dunn and Chadwick, 2001).
The third section deals with roles scientists could or mightplay in broader social discourse on contemporary topics, suchas genetics: preimplantation genetic diagnosis, selection andenhancement.
Science uses a vocabulary specific fordisciplines such as genetics. What a geneticist understands
about genetic pathways must be translated for the average

41

consumer in order to bring the issues forward for publicdebate.
Publicpolicyguidelines
emergefromrecommendations made by panels of ethicists and scientists
reasoning together. Larger public debate is helpful before
restrictions in funding or social prohibitions emerge whereconsensus is impossible. I assign a series of ethical articles
for and against genetic diagnosis for late onset genetic
diseases and selected articles that are for and against efforts
to genetically enhance offspring, in order to capture thephilosophical grounding each author uses for their position.
Philosophical Foundation
Helping students find a moral compass, a grounding of
why one ought to behave in ethical ways in their profession
and more generally in life is challenging. For many years, I
appealed to moral theories as a grounding point for ethicalreasoning, selecting a consequentialist approach, because it
was likely that students would relate to a rules - based
approach. Some students are open to recognizing the
rewards or punishments as consequences when rules areupheld or broken, but most are resistant to seeing themselves
as morally culpable. Students focus on their individual opinion
and values, not because they are universally valid but
because they believe their morals are their own, learned inchildhood. Increasingly students insist that ethics is relative,
embracing a strong sense of tolerance for diverse value
systems.
Having tried to teach the contours of consequentialist
utilitarianism, respect for persons as teleological or
ontological arguments to ground an ethical choice, I findstudents less and less willing to stick to any theory or set ofprinciples for every situation, case or narrative. The voices
claiming, “It depends” become louder by the semester. In thecontext of students without prior courses in philosophy andalready engaged in a scientific career, narrative ethics has
become more and more appealing.
Narrative ethics uses stories that provide ethical insight
and wisdom for action without appeal to ethical principles,rules or maxims or narratives that support and expose theethical wisdom embedded in principles, rules or maxims(Brody and Clark, 2014). Well-chosen stories communicate
values and actions, and demonstrate moral virtue. By
critiquing and comparing stories students are helped in the
discovery of what values they resonate with and encounter
desirable virtues they may choose to develop.
Narrative helps embody ethical dilemmas: real charactersin real situations wrestling with real decisions. Students
repeatedly assert that there are no universal rules orstandards or principles that address every conceivable ethicaldilemma. When students cluster in small groups to discuss acase they start with an intuitive sense of right and wrong, andthey make moral claims based on the values they haveacquired thus far in their lives. They do not all start at thesame place, and hearing what someone else thinks often
leads to a reinforcement of their starting position. Talking
about the case does not immediately give way to consensus,
but it exposes the contours and conflicts of the ethical case
(Lantos, 2014).
Trying to explain why one answer or response to a case isgood or better than another exposes a lack of overall
conception of the good. If each student can freely express hisor her idea of the good, and suggest an action as a freeautonomous agent, we are left with silence because each
student is their own judge of right and good. Such plurality
reflects a cultural arc toward relativity and away fromuniversal or absolute ethical normative philosophy. No one
moral authority has the ethical trump card in today’s debates.
So how do we know what is right or good in a given situation

42

Eubios Journal of Asian and International Bioethics 25 (March 2015)

for ourselves and for those with whom we share common
culture, space, and resources?
Students appeal to early teaching and childhood
experience as their moral grounding. Their values areproducts of their childhood development, similar to theirpreferred foods. If that is true, and we do acquire our values
from parents and teachers, how is it we claim to beautonomous free moral agents? Do our moral values change
in the same way our culinary delights do by trying otheroptions? Perhaps talking about what we think, why we think it,
and listening to what others think and their reasoning, is agood beginning place for ethics education in any discipline.
In teaching across disciplines it is useful to be vocabulary
sensitive because every discipline has its favored jargon.
Students find it difficult to believe that anyone would actuallylose sleep by having failed to maximize happiness. Articles
from the bioethics literature inevitably send students for the
online dictionary. Simplifying without diluting the substantive
claims of the moral theorists is necessary if we want students
to believe that ethics and moral actions are for everyone. If
misconduct is to be overcome, it is important that people
without advanced degrees in philosophy can participate in thediscussion.
Smart students can remember technical terms, memorize
mantras, solve complex theoretical problems but that does
not portend a working knowledge or wiliness to apply thetheoretical when the practical situation takes place and they
are the moral actor. Students are aware of ethical dilemmas
from their own lived experience. They have had to decide totell the truth or not when the answer they give may bringpunishment on themselves or others. They have decided togive or receive unauthorized aid on an exam. They havedecided whether to help someone in need at some cost tothemselves. Telling the truth, not stealing, are common value
choices that are not the exclusive purview of research or
medical scientists. Students have a personal ethical codethat has emerged from experience, education, and humanrelationships are still forming. Anyone who is intellectuallyhonest does not think the same thing for four score and ten
years. Students may not have a philosophical backgroundthat will allow them to quote Plato or a contemporary
bioethicist but when they see a virtuous leader in their field ofchosen pursuit, they know it. Students are generally unawareof the variety of dilemmas they could face in their scientificcareers, therefore a course in Science and Ethics should
strive to increase awareness of potential dilemmas and offer
an ethical toolkit for the journey.
References
Steneck, Nicholas H. ORI Introduction to the Responsible Conduct ofResearch,
U.S.
Government
Printing
Office,(2000)(www.ori.hhs.gov/rcr).
Penslar, R. L. Research Ethics: Cases and Materials, Indiana Univ.
Press, Bloomington, (1995).
Lee, L. M. The Presidential Bioethics Commission: Pedagogicalmaterials and Bioethics Education. Hastings Center Report 16-19(2013).
Wright, D., National Public Radio; “Why is Scientific Misconduct on
the Rise?” (Oct 13, 2013).
Plemmons, D.K., S.A. Brody, and M.W. Kalichman, Student
Perceptions of the Effectiveness of Education in the Responsible
Conduct of Research, Science and Engineering Ethics, 12(3): 571582 (2006).
Martinson, B.C. Scientists behaving badly. Nature 435:737-738(2005).
Wakefield, A.J., et al., Ileal-lymphoic-nodular hyperplasia, nonspecific colitis, and pervasive developmental disorder in children.
Lancet 351:637-641 (1998) (retracted by Lancet Feb 2, 2010).
Morbidity and Mortality Weekly Report, Centers for Disease Control
and Prevention, Vaccination Coverage Among Children in

Kindergarten – United States, 2011-12 School Year, 61 (33): 647652 (2012).
Brown, S., Effects of training in the responsible conduct of research:
A survey of graduate Students in Experimental Sciences, Scienceand Engineering Ethics, 4 (4): 487-498, (1998).
Powell, S.T. Effectiveness of a responsible conduct of researchcourse: a preliminary study. Science and Engineering Ethics 13 (2):246-264 (2007).
Plemmons, D.K. and M.W. Kalichman, Reported Goals of Instructorsof Responsible Conduct of Research for Teaching of Skills, J.
Empir. Res. Hum. Res. Ethics 8 (2):95-103 (2013).
Murphy, T.F. Case Studies in Biomedical Research Ethics, MIT
Press, Cambridge, MA., (2004)
Dunn, C. M. and G. Chadwick, Protecting Study Volunteers in
Research: A Manual for Investigative Sites, Center Watch Inc,
Boston, (2001).
Brody, Howard and Mary Clark, “Narrative Ethics: A Narrative,” IN
Narrative Ethics: The Role of Stories in Bioethics, special report,
Hastings Center Report 44 (1): S7-11 (2014).

Lantos, John, “What we talk about when we talk about ethics,”
in Narrative Ethics: The Role of Stories in Bioethics, special
report, Hastings Center Report 44 (1`): S40-S44 (2014).

The Principle of Autonomy,
and decision-making
differences between
American and Chinese
Cultures- Yanguang Wang, M.D., Ph.D.
Institute of Philosophy, Chinese Academy of Social Sciences, Beijing,
China
Email: ameliaw2002@hotmail.com

I have researched the problem about how to practice thePrinciple of Autonomy for a patient or old person who loses
decision-making capacity in China and the USA. What is thedifference?
In the United States, often a surrogate from family members
makes decisions for a patient who has lost decision-making
capacity. In some states the law would like to find theevidence of the patient’s past wishes and ‘advance directive’.
Thus ultimately, this is not a family decision, or even familyautonomy. This ‘advance directive’ of a patient’s wishes isimportant for practicing individual autonomy, and individualautonomy is not only protected by American law but also isrecognized by the American culture of making ‘advancedirectives’.
The family, in Chinese culture, functions as a whole toprovide consent for significant medical and surgicalinterventions when a patient has lost decision-making
capacity. Older people, including the current generation, do
not think it is necessary to give a wish or ‘advance directives’before they lose decision-making capacity. One importantreason is the culture of Confucian family autonomy. The older
people, including the patient, need not to make an ‘advancedirective’, because the family makes the medical decision
instead, based on the long Chinese tradition.
Because of that the principle of autonomy could not simply
be imported into ‘already existing’ Chinese cultural systems.
The different cultures cause the difference in the relative
importance of autonomy between the USA and China. It
seems that the family autonomy in China cannot be
substituted by the western autonomy. However, in China thiscan better be done by formulating more individual-oriented
laws and policies, such as those that empower the patient toEubios Journal of Asian and International Bioethics 25 (March 2015)
establish a written ‘advance directive’ for the family members
and physicians to follow regarding surrogate decision making.
The principle of autonomy and the nature of autonomy has
long been a matter of philosophical debate. Concerning the
Chinese family autonomy and American individual autonomy
in decision-making differences, this topic is about how
Chinese bioethics applied the principle of autonomy within
Chinese culture. What makes a decision autonomous? Who(or what) is capable of deciding and acting autonomously? To
what extent should individual autonomy be valued? These
questions are significant because autonomy is considered to
be a precondition for moral agency in bioethics. Especiallythis conception of autonomy has important implications for
personal responsibility and the relationship between theindividual, family and society.
In USA, the utilitarian and the Kantian perspectives onthese questions each depend upon particular assumptions
about how we make decisions. According to the utilitarian and
the Kantian perspectives, autonomy can be considered as theright to be free to self-govern, and the person is capable of,and actually exercising, self-governance. Even when the
person is a patient, she is still thought of as an autonomous
person.
From the Chinese history and reflecting on modern Chinesecontemporary society’s morals, Confucianism is the mainvaluable morality. It permeates into the life of the Chinese.
One Confucian thought is to view individuals relationally.
Individuals are not thought of as existing independently or
being separate from any other being of family members. The
family members can act as a whole to make decisions for thepatient. This can be called family autonomy. Before myresearch on this issue, in my mind, I thought a person’s
relationship with family would be the same in the USA and in
China. Based on a philosophy of relationship, people in the
USA also have a family, and they should be related with otherfamily members. However, as we know, American bioethics
thinks the principle of Patient Autonomy is very important. I
needed to research how American patients relate with theirfamily and can practice individual autonomy during decision
making. I needed to determine what are the differences withwhat some Chinese bioethicists termed ‘family autonomy’ in
China.
From my early research, I learned that In the United States
the family is involved to make surrogate decisions for a family
member who has lost decision-making capabilities. The
concepts of autonomy, and surrogate decision makers, aresometimes interrelated. For example, it is worthless topersons who have the right to autonomy, but who have losttheir decision-making capabilities, to be placed in situations
where they are expected to exercise their autonomy. The
practice of having an established order was done forsurrogate decision makers, such as the spouse, children, andthen parents. It reflects the acknowledgment that the family asa social reality cannot be reduced to a stereotype of theappropriate order of default decision makers (1).
Some surveys in USA found respondents agreed thatelderly persons should keep responsibility and authority formaking their own decisions for as long as possible. When the
person became incapacitated, then decisions would be madeby their spouse (if living and able) and children. Allowing
elderly persons to keep making decisions, when they areable, is an obvious kind of respect. Respondents said they
believed that the family also would be the best and mosttrusted source to make decisions when their relative wasunable to do so. This authority would not constitute disrespect
to the incapacitated person.
Although the respondents said they wanted their family andchildren to be involved in the discussion of advance directives

43

and care plans, they all wanted, if possible, to have “the lastword.” They would consider using some kind of external
agent, like a person with power of attorney, or a court, but
only temporarily when a potentially very difficult decision had
to be made, the family were not available, and they could not
speak for themselves. However, ultimately they all said they
believed that their autonomous decisions should prevail
whenever possible, and that this would also preserve theirdignity (2).
From my research, it seems that surrogate decision making
in the USA tends to be family-oriented. It generally turns firstto family members to function as surrogate decision makers
for a patient who has lost decision-making capabilities.
However, the important point is that some states' laws wouldfind the evidence to support the patient’s last wishes and“advice directives," so that decision making is not a family
decision or about family autonomy. The family member who
acts as a surrogate decision maker is also likely to be areliable historian of the patient’s wishes. This “advice
directive” and the patient’s wishes are very important for thepractice of individual autonomy. Individual autonomy not onlyis protected by American law but also is a realization of theAmerican culture of making an “advice directive”.
Ideally, most American agreed that elderly patients shouldmake their own treatment choices for as long as possible,
including the authority to make their own advance directives,
but some elderly persons were reluctant to appoint a power ofattorney, believing it would mean losing control of their own
lives. But only when the elderly could not make competentdecisions should the family, guardian, or power of attorney
have the authority to act. They saw no role for government, or
any other external agent to be involved in this process (3).
In US culture, some family practices are based on alibertarian philosophy. Libertarians regard the family as thecreation of its members, or guided by overriding concerns forliberty and equality. They have a view of limited family
responsibility and autonomy. These families endorse
individual, not family, decision making for medical treatment.
This view also favors individual autonomy regarding
confidentiality. It requires that adolescents can make theirown healthcare decisions. This is despite the evidence thatadolescents do not usually have the capabilities of decisionmakers who have come of age (4).
This Libertarian philosophy gives individuals control of theirplace in society. For example, in the USA, there are rules thatthe family member cannot see the patient's doctor, if thepatient has not agreed to it. As a result, physicians are taught
to help patients to maintain their decision-making capabilities
to choose, and without the influence of family members. For
instance, the spouse and children are asked to leave thepatient alone with the doctor. The physician then asks thepatient whether the patient wants to have all discussions in
the absence of family and held in confidentiality from allothers. Also, the patient's information cannot be disclosed tofamily members. (5) With this kind autonomy there areproblems. This individual–oriented philosophy can hurt thepatient, and damage one’s dependence on other family
members and society. (6)Professor Tom Beauchamp said in the Sixth Edition of
Principles of Biomedical Ethics, concerning the issue ofdecision making for older persons, like in the USA, the familyneeds to respect the autonomy of the family members whoare patients, and respect their rights to make medical
decisions. It is seems worthwhile to protect this autonomy offamily members who are patients. But he also points out that
respect for autonomy is not an excessively individualistic,
absolutistic, or an overriding notion that emphasizes individual
rights to the neglect or exclusion of social responsibilities. The

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Eubios Journal of Asian and International Bioethics 25 (March 2015)

principle of respect for autonomy does not by itself determine
what, on balance, a person ought to be free to know or do or
as to what counts as a valid justification for constraining
autonomy (7).
In the culture of USA, another difference with the culture of
China is that when most persons are older, they like to live in
an independent living facility. One elderly American in an
independent living facility commented, “You feel like you are
independent because you are paying your rent andeverything, and you can lock your door and nobody bothers
you . . . When you lose your independence, you lose
everything including dignity.” (8) This view is very different
than the views of older Chinese.
Concerning decision making for American people, the term
“dignity” evoked several definitions, including: “individuality,”“sense of self and life control,” and “respect." All thought it isvery important for individuality to be maintained. But mostolder Chinese like to live dependently with family, they neverthink to loss dignity because children should have filial
obligation to them following Confucianism. (9)A case study made in Houston TX, USA, about long termcare (LTC) options in the USA, is a good example of how
differently elderly persons think about autonomy and decision
making compared to elderly persons in China. This study
showed, on the one hand, that the most preferred option wasof keeping elderly persons in caring and loving homesituations, either their own or their families. Personal choice
and independence were emphasized by elderly persons.
The use of the principle of autonomy and the process ofdecision-making are differences in the American and Chinese
Cultures. China maintains a fluid approach that reflects a wide
range of possible determinations of family, usually by animportant person of the family who is the family’srepresentative to make the decision. The family, in Chinese
culture, functions as a whole to provide consent for significant
medical and surgical interventions when a patient has lostdecision-making capacities.
This can be called familyautonomy. Even young Chinese people, do not usually think it
is necessary to give a list wish or “advice directive” before
they lose decision-making capabilities. A reason to cause theloss of patient autonomy or “advice directive” and other
difference in China is the cultural background ofConfucianism. Competing views of the family have important
implications for research on the topic.
The Confucians traditional family is an ontologicalmetaphysical account of the family, which appreciates thefamily as a normative social reality that, as far as possible,
should be realized by particular families. This account brings
with it preexisting roles for husbands and wives, fathers,
mothers, and children. The Confucians traditional family tends
to be multi-generational, looking back with respect andsupport to previous generations. It regards the family as anormative socio-biological unit, it supports the autonomy andintegrity of the family. This is why the Chinese family
endorses family-based decision making for patient, and theChinese have no views to make “the last word”, when they
are in healthy, and the family members and physicians cannot
find the evidence about the patient’ past wishes and “advice
directive” (10).
In Confucian society, close relatives are not merely bloodkin or socially supportive, they sustain an ontological elementof one’s very being. In order not to be one sided andincomplete, one’s decisions must be made together with them(11). From the Confucian view, humans have morally
significant social organization, such as family, community andstate. As a center of relations, a Confucian person mustachieve harmonious cooperation with other human persons inthese social institutions.

On the one hand, Confucians think that children have a filial
obligation to their parents, because children are taken care ofby parents, and parents pay more time and money tonurturing children in China, this is the reason why the older
who lives dependently with children does not feel losing
dignity. In the USA, I can see some of children leave parents
around 18 years old, and the parents have limited
responsibility to them, the children have a limited duty to takecare of the parents, this make the family relationship looser,
and the relative’ relationship also is looser than in Chinesefamilies. In China, the entire family must take care of a sickfamily member, including sustaining the burden of discussing
treatment options with the physician and making ordinary
therapeutic decisions for the patient (12).
As an American said, we know what they do in China,
they’re very good about taking care of their parents. I know
that’s a very outstanding trait that they have. It is not so muchthat way with modern America. It depends on the individual,
but as a whole people is not as family oriented to taking careof their parents as they are in the Orient. But we all have that
responsibility, I think, and we should have it, to take care andmake sure that our parents are taken care of.
Nonetheless, family medical co-decision making canpromote the Confucian values of family, family responsibility,
and the well-being of individuals. Following the long history ofAsia, traditional Confucianism and family decision making will
not be changed in the near future.
But Chinese also need to pay attention to a problem relating
to family autonomy. For example, According to Confucian
customs, the Chinese usually have the physician to explain
the patient's condition to family members first. Also, cancer
patients are informed only after their family members haveagreed on what the physician can tell the patient. In special
health care situations, families make decisions for the patient
without the participation of the patient (13) During thisprocess, if the children try to hurt the sick parents, or do notmake decisions with physician together, family autonomy canlead to abuses. For that, special precautions and protective
rules should be established.
We need to make sure that in the Confucian model of family
decision making, it can serve as the first bulwark in protecting
vulnerable patients (14). We need to make sure that when afamily’s decision is completely in disagreement with thephysician’s professional judgment about the medical bestinterests of the patient, the physician can communicatesdirectly with the patient.
Currently, the patient-physician relationship is not inbalance in China. Some physicians are afraid that thepatient’s family will sue or hurt them, they have to follow thefamily’s decision, even though the doctor may want to try toserve the needs of the patient. Therefore, in a Confuciansociety, the medical professional should insist on protecting
their moral integrity, and the Chinese family should recognize
these medical limits.
This model of medical decision making is not unique toChinese culture, but it is also advocated in some easterncountries. However, there are broad spectrums of views in
America that address the potential obligations of children
toward their parents. These vary from a very conservative,
almost Confucian view, such as those of certain Christians at
one end. The libertarian views are at the other end, whichemphasize the importance of individual choice for all
members of the family.
The principles of autonomy upheld by Western bioethics
meets challenges in China. Therefore, Western bioethics
could not simply be imported unaltered into traditional
Chinese cultural systems. It is not appropriate to just adopt
the dominant Western concept of autonomy into the Chinese
culture. Indeed, it can also be appropriate to consider andEubios Journal of Asian and International Bioethics 25 (March 2015)
respect the cultural differences, but there are no “last words”
which may have possible negative consequences to patient.
With the principle of the family autonomy, Chinese might
think that this can be done by formulating more individualoriented laws and policies, such as those that empower thepatient to establish a written “advance directive” for the family
members and physicians to follow regarding surrogate
decision making. Currently, a Hong Kong bioethicist is
working on the use advance directives in patient decision
making.
Contemporary Chinese lives have been corrupted by thelibertarian individualist ideology, as young people are
becoming increasingly individualistic under the influence ofWestern culture. In addition, we hope that they will not be so
afraid of death that they cannot bring themselves to give the"last word" before they lose their capability of decision
making. We also want younger persons to improve theirunderstanding of family autonomy, diseases and medical
knowledge. In this way, when younger persons know andunderstand a disease, such as cancer, and are told of it andwhat about the cancer patient by the physician, they may not
be as emotionally hurt and hope the medical science isunlimited (15).
For some old generation patients who have no knowledge
about when a disease is diagnosed as cancer or other serious
disease, the physician can tell the family members first. The
family can then decide whether or not to tell their relative
patient. If they think it is not good to tell their relative patient,
they will discuss the treatment possibilities with the physician
and make a right decision based on Chinese Culture. This
culture can be called harmonious by Confucian view.

Concept of “Treatmentalization”- Taka Fujii, M.D., Ph.D., OHP
Kumamoto city West Ward Office (Public health physician andOccupational Health Physician);
Saga University Faculty of Medicine (Lecturer); Nurses Training
School of Kumamoto City Medical Association; Graduate School ofSocial and Cultural Sciences, Kumamoto University, Japan
Email: fujii.taka@city.kumamoto.lg.jp

Abstract
This paper aims to propose the concept of“Treatmentalization.”First, this concept is defined as
dependency that occurs when people and society placeemphasis not on prevention but on treatment of disease.
Second, an example of treatmentalization through treatingtype 2 diabetes as a lifestyle-related disease is discussed.
Finally, the structure and cause of treatmentalization isanalyzed.
In the past, main aim of medicine had been to prevent
outbreak of infections. Humans were able to avoid many
infections with such things as immunization and antibiotic
drugs.
However, as technologies improved, people
increasingly sought to treat other injur and disease.
Moreover, extension of medicine has been caused by
medicalization and treatmentalization.
This paper willconsider treatmentalization concurrently with the progressionof type2 diabetes as an example, and analyze its structure.
What is “Treatmentalization”?
3“Treatmentalization” was coined by Fujii in 2012 todescribe a phenomenon where an individual places greatemphasis not on prevention but on treatment of disease. It is
the “dependency” on medical treatments in which people
assume medical treatment is a remedy for all illnesses (“If I
have a disease, I can treat it.”), and which is tolerated at
individual and/or social level.
Advancement in medical technology often has its benefits.
Technological advancements lead to a wider range oftreatment options and those which were untreatable now
become treatable. When these medical technologies areapplied to treatments not only for intractable diseases but also
for common diseases, people may increasingly become
negligent toward preventing lifestyle-related diseases.
In this regard, it is important to note that the concept oftreatmentalization refers to medical practice only.
This
concept does not include enhancement. Also, the concept oftreatmentalization does not deny the importance ofappropriate treatments for patients.
This paper argues
preventive treatments or treatments for congenital, idiopathic,
and/or intractable diseases by advanced health caretechnology are preferable to treatmentalization.
Moreover,treatmentalizationisdifferent
frommedicalization.
Medicalization is the process whereby
previously non-medical aspects of life come to be seen in
4
medical terms, usually as disorders or illnesses.
Medicalization is seen in a wide variety of medical fields suchas delivery, psychiatry, death, and aging. In other words,
medicalization means expansion of medical treatments’ target

References
1) Ruiping Fan, Contemporary Confucian Bioethics Peking
University Press，2011，p.60.
2) Eugene V. Boisaubin et al, Perceptions of Long-Term Care,
Autonomy, and Dignity, by Residents, Family and Care-Givers :The Houston Experience , Journal of Medicine and Philosophy,
Vol.32, No. 5 , Aug 1990, pp.447–464.
3) Eugene V. Boisaubin et al, Perceptions of Long-Term Care,
Autonomy, and Dignity, by Residents, Family and Care-Givers :The Houston Experience , Journal of Medicine and Philosophy,
Vol.32, No. 5 , Aug 1990, pp.447–464 .
4) Center For Applied Ethics, Hong Kong Baptist University, Ethics
and Society Newsletter, Vol.20 June 2014, p.14.
5) Shui Chuen Lee, The Family, Medical Decision-Making, andBiotechnology, P& M 91, 2007, p. 15.
6) Julia Tao, Cross-Cultural on the Possibility of Global Bioethics,
Kluwer Academic Publishers, P&M 71,2002, p. 95.
7) Tom L. Beauchamp, Principles Biomedical Ethics, Sixth Edition,
Oxford University, 2009, p. viii.
8) Eugene V. Boisaubin et al, Perceptions of Long-Term Care,
Autonomy, and Dignity, by Residents, Family and Care-Givers:The Houston Experience , Journal of Medicine and Philosophy,
Vol.32, No. 5 , Aug 1990,pp. 447–464.
9) Eugene V. Boisaubin et al, Perceptions of Long-Term Care,
Autonomy, and Dignity, by Residents, Family and Care-Givers :The Houston Experience, Journal of Medicine and Philosophy,
Vol.32, No. 5 , Aug 1990, pp. 447–464.
10) Center For Applied Ethics Hong Kong Baptist University, Ethics
And Society Newsletter, Vol.20 June 2014, p13.
11) Shui Chuen Lee, The Family, Medical Decision-Making, andBiotechnology, P& M 91, 2007, p. 21.
12) Ruiping Fan, Confucian Bioethics, Philosophy and Medicine
61, 1999, p. 13.
13) Shui Chuen Lee, The Family, Medical Decision-Making, andBiotechnology, P& M 91, 2007, p. 61.
14) Center For Applied Ethics, Hong Kong Baptist University, Ethics
and Society Newsletter, Vol.20, June 2014, p.13.
15) Shui Chuen Lee, The Family, Medical Decision-Making, andBiotechnology, P& M 91, 2007, p. 62.

45

3

rd

The 3 Conference of the Japanese Association for Philosophicaland Ethical Researches in Medicine (Kyushu) (8 September 2012)
and the 6th UNESCO-Kumamoto University Bioethics Roundtable (8–10 December 2012)4
Deviance, Medicalization of PJ McGann and Peter Conrad
http://www.sociologyencyclopedia.com/public/tocnode?id=g97814051
24331_yr2012_chunk_g978140512433110_ss2-3

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Eubios Journal of Asian and International Bioethics 25 (March 2015)

domains. Treatmentalization therefore might lead people toseek medical treatments at a later time than necessary.
Type 2 Diabetes as an example
Diabetes is a complex group of diseases with a wide varietyof causes. People with diabetes have high blood glucose
levels. Type 1 diabetes is usually first diagnosed in children,
teenagers, and young adults. In this type of diabetes, the beta
cells of the pancreas no longer make insulin because thebody’s immune system has attacked and destroyed them.
Type 2 diabetes is the most common type of diabetes. Type2 diabetes is also associated with excess weight, physicalinactivity, family history of diabetes, previous history ofgestational diabetes, and certain ethnicities.
Type 2 diabetes usually begins with insulin resistance andis a condition linked to excess weight because muscle, liver,and fat cells do not use insulin properly. As a result, moreinsulin is needed to help glucose enter cells to be used forenergy. At first, pancreas is able to respond to added demandof producing more insulin. However after a while, pancreas
loses its ability to produce enough insulin, and blood glucose
5levels rises.
Progressive stages of diabetes are as follows. Whenfasting blood glucose exceeds 100 mg/dl, and HbA1c(glycohemoglobin) exceeds 5.6%, it is the beginning of the
pre-diabetes stage. When fasting blood glucose level is 126
mg/dl or greater, and HbA1c is 6.5% or greater, it isdiagnosed as diabetes. In addition, diabetes progresses into
more severe diseases such as cerebral stroke or cardiac
infraction (based on arteriosclerosis of great arteries),
neuropathy, retinopathy, and/or nephropathy (based on
microangiopathy) without proper treatments.
There are approximately 4 treatment stages for diabetes.
(1) For normal condition, lifestyle improvement is important.
(2) For pre-diabetes stage, early detection and early
treatment are needed. This is called secondary prevention.
(3) In early stages, internal control such as drugs is needed.
(4) In the complication stage, symptomatic therapy (surgicaloperation, dialysis, kidney transplantation) and rehabilitation
are needed to maintain patient’s life and his/her quality of life
respectively. If people maintain good lifestyle, diabetes canbe prevented. Also, if patients are able to control their bloodpressure at an early stage, they can prevent further
complications.
Improvements in techniques as well as social
circumstances(law,
opinion,system)for
organtransplantation will lead to an increase in the number oftransplantations
forcongenital/idiopathic
diseases.
Additionally, the number of renal transplantations for terminal
renal failure (most of then are diabetic nephropathy) will
increase as well. At that time, some diabetes patients may
believe organ transplantation would be an answer to diabetes, in other words, “If I fail to control my blood glucose level, I
can receive renal transplantation to treat it.”.
That istreatmentalization.
Furthermore, let us consider about improvement inregenerative medicine. Radical care for some types ofcongenital/idiopathic diseases will become possible throughadvancement of regenerative medicine. As treatment forevery disease, injury, and disability would become possible
and successful, the quality of treatments would also improve.
Improvements in regenerative medicine therefore will in the
future resolve the issues surrounding non-autologous organtransplantation such as brain death criteria and conflicts with
do-no-harm principle. However, some people may believe

regenerative medicine to be a miracle cure for everything (“If I
have a disease or injury, I can depend on regenerative
medicine to recover.”). This also is an example oftreatmentalization.
The same might occur in other medical treatment domains.
If new treatment technologies are applied to the population atlarge as a standard treatment, there are two possible
outcomes. In other words, on one hand, health disparity may
be resolved while on the other hand treatmentalization will bepromoted. If medical technologies improve, they would beapplied to congenital/idiopathic disease. Then, application of
medical technology may expand to lifestyle diseases andinjury by accidents or infections, in turn diminishing theawareness for preventive care.
Structure of Treatmentalization
What is the relationship between Treatmentalization andother ethical concepts, such as justice and fairness.
Application of new medical technology in private practicewidens health disparity hence resulting in injustice. Suchapplication as a standard treatment may be able to resolve
the health disparity. However, treatmentalization will bepromoted.
Who will be responsible for the costs and risks? If a benefit
concentration to a limited number of people results fromapplication of new technology, and people who do not benefit
from it continue to pay its cost, these situations can be said tobe a case of injustice as well. Availability of treatments madepossible by new medical technology as well as the number of
research institutions capable of utilizing them are limited dueto the particularity of those treatments.
Does profitconcentration to these limited numbers of companies anduniversities constitute distributive justice?
What is the relationship between treatmentalization andautonomy? Autonomy has two aspects. First, let’s consider
treatmentalization in relation to autonomy in the context of
Anglo-American Bioethics. Self-determination in clinical trials
or medical treatment is important. Thus we need informed
consent. People have a right to utilize advanced technology
in private practice. Autonomy of research institutions andresearchers should also be respected. The second aspect isthe relation of treatmentalization to autonomy in the Kantian
sense. Under this type Autonomy, people must make achoice based on autonomous personality and universal rule(maxime).
The process by which advanced medical technologies
becomes a standard treatment is similar to the process ofestablishing environmental policies.
Standardization
procedures of advanced medicine by a government is beyond
the framework of personal informed consent. Decisions andrelevant acts involved not only affect decision-makers or
specific patients but also the population at large. Similar
phenomenon arises in an environmental policymaking
situation. For example, determination on the Fukushima no.1
nuclear power plant does not affect only Fukushima residents
and workers, but also Tokyo residents as recipients ofelectricity supply, every Japanese resident, as well as allliving things. Also, who would be responsible for the cost of
standardized treatment just like the cost for environmental
issues?
Progress of standardization of advanced medicine mightlead to neglecting prevention approaches utilized by publichealth or internal medicine at individual and social level. Thatis treatmentalizaion. However, why does treatmentalization
occur? I think that this is because Human nature prefers thegreater amount of pleasure.

5

National Diabetes Information Clearinghouse (NDIC)
http://diabetes.niddk.nih.gov/dm/pubs/diagnosis/
browsed.)(2012/12/12

Previously healthy person modelA) Lifestyle based on Yojo.* Yojo () is a Japanese term forEubios Journal of Asian and International Bioethics 25 (March 2015)“caring for one’s own health and life.” Yojo could range from

suffering to moderation to pleasure depending on theindividual –– Pleasure is 0, 1, or more*.
B) Intemperance lifestyle 1: Intemperance (pleasure) àaccident or sickness (suffering) à premature mortality (nochange because agent is absent) –– Pleasure is 1 or more.
C) Intemperance lifestyle 2: Intemperance (pleasure) àaccident or sickness (suffering) à treatment &recovery(pleasure) –– Pleasure is equal to 2 or more.
(*Note: only adding of pleasure, not subtracting for suffering）
Pleasures of congenital disease patients can also be
calculated in fundamentally the same way. Though, there are
more complicated patterns depending on the combinations oflifestyles. Criteria which determine pleasure and pain dependon the individual. However, people prefer to feel pleasure
universally, and most people want to get as much pleasure as
possible. Unfortunately, many people repeat intemperance
and treatment to achieve more pleasures. This repetitive
behavior is in line with treatmentalization.
Repeated oscillation between pleasure and pain causes
greater entropy. Entropy maximization in an individual leads
to one’s death. Entropy maximization in a population leads tosocial collapse (e.g. increases in the number of donors andrecipients, resources consumption, and the number of people
requiring care). That is to say, treatmentalization may bringabout loss of individual lives and social lives (social order).
This loss is an undesirable result from a biocentric point ofview.
There are two possible opposing views of treatmentalization
which will be examined in the future: emphasis on prevention
6and “Freedom to be weak ” or freedom to have disease.
Treatmentalization and prevention are the concepts which areused in medical situations, while treatmentalization and“Freedom to be weak” (or to have disease) are in that they
are relevant to judgments after a person have had medical
problems. These three concepts treat individual attitudes
toward one’s own health and life, and will be further discussed
in the future to analyze structure of treatmentalization, as well
as better ways of living.

Shortage of organ donation
resulting from difficulties inthe diagnosis of brain deathby medical practitioners in
Malaysia
1

Shin’ya Tateiwa (2000) Freedom to be weak, Tokyo, Seidosha.

1- Nor Aina Mhd Khotib , Noor Naemah Abdul Rahman , Shaikh Mohd
2
Saifuddeen Shaikh Mohd Salleh
1
Department of Fiqh and Usul, Academy of Islamic Studies,
University of Malaya, Kuala Lumpur, Malaysia
E-mail: nor_ina@siswa.um.edu.my2
Consultant, Programme for Applied Sciences with Islamic Studies,
Academy of Islamic Studies, University of Malaya, Kuala Lumpur,
Malaysia

Abstract
The issues of brain death and organ donation are closely
related. Brain death is the irreversible loss of brain function,and from the medical perspective, a person who is brain deadcannot be recovered. The shortage of organs fortransplantation is a worldwide problem. One of the reasons
contributing to the shortage of organs is the refusal of medical
practitioners to diagnose brain death. This paper will highlightfour factors why medical practitioners in Malaysia may refuse
to diagnose brain death. These factors include: 1) medical
practitioners may not accept brain death as true death, 2) a
misconception in the diagnosis of brain death, 3) a lack ofknowledge about brain death, 4) a lack of responsibility incarrying out professional duties. These four factors will be
discussed on the backdrop of ethics as the ethicalimplications pertaining to brain death diagnosis in Malaysia.
Introduction
Organ donation is the best method of treatment for patients7with end-stage organ failure . Organs such as heart and lungs
can only be obtained from brain dead patients. This isbecause the organs are still fresh from the oxygen supply
received through ventilators as the brain dead patients would
still be on the life support machine.
Shortage of organ donors is one of the problems faced bymany countries, including Malaysia. Malaysia has a low rateof organ donation when the rate of organ donation fromdeceased donors is among the lowest in the world whencompared to other countries. A report from the National
Transplant Resource Centre showed that there were only 26
8actual donors in 2013 . One of the causes for the small
number of organ donors is contributed by the low rate ofreferral of brain dead patients. Referrals are made by doctors
who treat patients who have been diagnosed with brain death.
Mortality in intensive care units in some hospitals due to brain
death is high, but when brain death diagnosis is not done,
9then the patient would not be on record to be brain dead .
When there is no diagnosis of brain death, then there would
not be any referral. As a result, the number of potential
7

6

47

W G Sui et al., “Successful Organ Donation from Brain Dead Donors
in a Chinese Organ Transplantation Center.,” American journal oftransplantation : official journal of the American Society ofTransplantation and the American Society of Transplant Surgeons,
11(2011),
2247–49<http://dx.doi.org/10.1111/j.16006143.2011.03694.x>. p 2247
8
http://www.dermaorgan.gov.my/penderma-sebenar-2/. [accessed
25 August 2014]
9
Interviewed with Dr. Fadhilah Zowyah Lela Yasmin Binti Mansor(Chief National Transplant Procurement
Manager & Donor
Coordinator - Malaysia)

48

Eubios Journal of Asian and International Bioethics 25 (March 2015)

donors would not be as high as it should be. However, it does
not mean that if the referral rate is high then the number ofdonors is also high. At the end of the day, in Malaysia,
whether a brain dead patient becomes a donor or not
depends on permission given by the next-of-kin (even if thepatient is an organ pledger). Nonetheless, high referral rate
shows that there is an effort among doctors, especially in the
Intensive Care Unit, to diagnose brain death. Some of thesepatients diagnosed may turn out to be potential donors. The
bottom line is if diagnosis of brain death is not done, then theprobability of getting a donor is very low.
This paper aims to identify the factors contributing to theshortage of brain death diagnosis. Although Malaysia has
accepted the concept of brain death in terms of legislation,
religion and practice, it is hypothesized that there are still
doctors who do not accept or do not apply the concept ofbrain death.
Methodology1)Questionnaires
Questionnaires were distributed to doctors at the Universityof Malaya Medical Centre (UMMC). A total of 80 respondents
were selected consisting of doctors working at four major
departments of the hospital namely anaesthesiology,
medicine, surgery and emergency medicine. This
questionnaire data is collected anonymously to ensure
confidentiality. The pilot test was done, and the final version
was distributed to respondents. This questionnaire wasdesigned to identify the reasons as to why a low number of
medical practitioners in Malaysia diagnose brain death. Many
literature written on this matter attributed this to knowledge
and attitude of doctors towards brain death. In this survey, a“good knowledge and attitude” can be defined when the
doctor do not require any information on brain death, and they
can provide information to the families of brain dead patients
confidently. This study has been approved by University of
Malaya Medical Ethics. The findings were analyzed and thepercentages for each answer are presented in the Tables.
2) Interview
An interview was also conducted with Dr. Fadhilah Zowyah
Lela Yasmin Binti Mansor who is Chief National Transplant
Procurement Manager and Donor Coordinator of the National
Transplant Resource Centre, Malaysia.
Results
The table below shows the summary of the results obtained
from the study which shows the percentage of the responses
given by the doctors to the questions asked. 80 respondents
were selected but one of them not give a complete answer.
Therefore, only 79 respondents were analysed.
Questions
Do you know what is "brain
death”?
Are you involved in the
diagnosis of brain death?
Have you ever treated brain
dead patients?

Yes
100%

No
0%

37%

63%

76%

24%

answered true, 15% answered false and 30% did not know.
While slightly more than half of the respondents answered
this question correctly, it is quite alarming that the remaining
46% either answered wrongly or did not know.
On another matter, the majority of the respondents (90%)
agreed that doctors should take part in discussions of brain
death with the family of brain dead patient.
Questions (%)
My knowledge about brain
death is sufficient for me to
managebrain
deadpatients.
I do not need more
information on the issue ofbrain death.
I feel confident that I am
able to explain the issue ofbrain death to the patient's
family.
Doctors should take partin discussions of brain
death with the family ofbrain dead patient.
Brain
dead
patientsshouldbecomeorgan
donors.
I would like to become
an organ donor if I am
diagnosed to be brain
dead.
Diagnosis of brain death
is a way to increase thenumber of organs
fortransplant

Disagr
ee

Not
sure

Agree

Strongly
agree

6.4

31.6

26.6

31.6

3.8

16.4

63.3

7.6

7.6

5.1

7.6

27.8

27.8

31.7

5.1

6.3

0

3.8

51.9

38

5.1

19

27.8

36.7

11.4

8.9

3.8

21.5

33

32.9

12.6

19

17.7

34.2

16.5

Discussion
1) Medical practitioners may not accept brain death as atrue death
Studies conducted in several countries such as Israel, Italy
and Switzerland showed that there are doctors who do not
10
accept brain death as legal death . Approximately 1/5 ofdoctors from studies conducted in these three countries do
not accept brain death as death. Although the concept ofbrain death is accepted and adopted in many countries, it isstill not recognized in countries such as Egypt, Syria and
11 , 12
Pakistan.
Therefore, for this study, a hypothesis wasmade that Malaysian doctors who graduated from Egypt do
not accept the concept of brain death because Egypt does notrecognise the concept of brain death as death. Attitudes
towards the acceptance of brain death will impact on theorgan donation process. Most doctors who do not accept
brain death are those who are not involved with the processof organ procurement or who are unfamiliar with the donation
process.
Abidin et al in their study done at University of Malaya
Medical Centre showed that there are still some doctors who

10

The results show that there are many doctors who needadditional information regarding brain death. 63.3% of doctors
disagreed when asked if they do not need more informationon the issue of brain death. If they do not have enoughknowledge, it will affect their explanation to the patient's
family. That would contribute towards doctors having low
confidence when explaining about brain death.
The respondents were also asked whether Malaysia
accepted the concept of brain death as death. In total, 54%

Strongly
disagreeJonathan Cohen et al., “Attitude of Health Care Professionals to
Brain Death: Influence on the Organ Donation Process.,” Clinicaltransplantation, 22 (2008), 211–15 <http://dx.doi.org/10.1111/j.13990012.2007.00776.x>. p 213
11
Mohd Rani Jusoh, “Mati Otak: Konsensus Pengamal Perubatan,” in
Sempadan Bioteknologi Menurut Perspektif Islam, ed. by Shaikh
Mohd Saifuddeen (Kuala Lumpur: Institut Kefahaman Islam Malaysia(IKIM), 2005), pp. 139–52.
12
Abdulla A Al-Khader, “The Iranian Transplant Programme:
Comment from an Islamic Perspective.,” Nephrol dial transplant, 17(2002), 213–15 <http://www.ncbi.nlm.nih.gov/pubmed/11812868>.

Eubios Journal of Asian and International Bioethics 25 (March 2015)13

are unwilling to accept the concept of brain death although
the Malaysian Medical Council (MMC) has issued guidelines
14on the acceptance of brain death in 1996 . In this study,
however, from the demographic data compiled through thequestionnaire, none of the respondents had their medical
background from countries which do not accept brain deathas legal death. As such, the hypothesis could not be tested.
2) A misconception in the diagnosis of brain death
The study conducted at UMMC in 2013 found that only
10.6% of doctors thought only a neurologist could certify brain
15
death . In this study, a similar misconception still occurs, with
24.4% of the respondents answered that doctors involved in
the process of organ procurement can diagnosis brain death,and half of them do not indicate that a neurosurgical specialist
as a person who can diagnose brain death. Thismisunderstanding can reduce the number of brain death
diagnoses. In Malaysia, it is a legal requirement that doctors
involved in certifying brain death consist of two specialists,
with at least three years of postgraduate clinical experience
who are trained in brain death assessment and diagnosis.
They should preferably be anaesthesiologists, physicians,
16
neurologists and neurosurgeons .
3) Lack of knowledge about brain death
Lack of knowledge of brain death is a result of little
exposure on the concept of brain death among doctors. Oneof the ways to give a clear understanding is to introduce aformal subject related to brain death and organ donation in17
the early clinical year of medical training. Lack of knowledge
related to brain death will result in discomfort among doctors
when explaining brain death to family members of patients.
Previous studies showed that the level of understanding of
18,19
physicians on brain death is poor.
This situation is caused by a lack of education andexposure while in medical school. Before this, there are many
reports which only assess medical students and physicians'
understanding on the issue of organ donation, but these do
20 , 21
not focus on basic issues of brain death.
There areseveral studies regarding knowledge and attitudes of doctors
22on the issue of brain death has been carried out in Korea ,
23
24
25
26
Pakistan , Egypt , Japan and Poland. The study found13

Zada L Zainal Abidin et al., “Are Health Professionals Responsible
for the Shortage of Organs from Deceased Donors in Malaysia?,”
Transplant international : official journal of the European Society for
OrganTransplantation,
26(2013),
187–94<http://dx.doi.org/10.1111/tri.12019>. p 6
14
Mohamed Ismail Merican, “Guidline Of The Malaysia Medical
Council”, 2006.
15
Abidin et al.. p. 6.
16
Mohamed Ismail Merican. p.13.
17
Cohen et al.. p. 215
18
S J Youngner et al., “‘Brain Death’ and Organ Retrieval. A CrossSectional Survey of Knowledge and Concepts among HealthProfessionals.,”
JAMA ,
261(1989),
2205–10<http://dx.doi.org/10.1001/jama.261.15.2205>.
19
Harrison AM and Botkin JR, “Can Pediatricians Define and Apply
the Concept of Brain Death?,” Pediatrics, 103 (1999), 82.
20
Elke S Schaeffner et al., “Knowledge and Attitude Regarding Organ
Donation among Medical Students and Physicians.,” Transplantation,
77 (2004), 1714–18 <http://dx.doi.org/10.1097/00007890-20040615000015>.
21
R C Afonso and others, “Future Doctors and Brain Death: What Is
the Prognosis?,” Transplantation proceedings, 36 (2004), 816–17<http://dx.doi.org/10.1016/j.transproceed.2004.03.065>.
22
K.O. Jeon et al., “A Study on Knowledge and Attitude toward Brain
Death and Organ Retrieval among Health Care Professionals in
Korea,”
Transplantation
Proceedings,
2012,
859–61<http://dx.doi.org/10.1016/j.transproceed.2012.02.019>.
23
Sheerani et al..

49that there are doctors who are not clear about the definition ofbrain death, and some of them reject the concept of brain
27
death such as those in Egypt.
From the results of this study, 76% of respondents havetreated brain dead patients but 63.3% of them still require
more information on the issue of brain death. The current
knowledge that they have is still not sufficient to manage brain
dead patients.
4) Lack of responsibility in carrying out professional
dutiesBased on the interview with Dr. Fadhilah Zowyah Lela
Yasmin, it is found that many doctors did not make adiagnosis of brain death to patients who were brought to the
Intensive Care Unit (ICU). The patients would be put on life
support machine in order to assist the heart and respiratory
process. Most of these patients would eventually die when infact, from the medical perspective, they are already brain
dead. Dr. Lela Yasmin is of the view that it would be more
ethical for doctors to make a diagnosis of brain death on
patients suspected of being brain dead rather than leaving
them on the life support machine.
Furthermore, it is responsibility of doctors to explain brain
death and organ donation to the patient’s family. A study
conducted by Abidin et al. showed that the shortage of organs
in Malaysia is caused by passive attitude among doctors to
identify a suitable organ. Almost two-thirds of respondents
had never approached the family of brain-dead patients to
28
explain about organ donation .
Acceptance and application of the concept of brain death aslegal death is a major issue in organ donation because therise of acceptance of brain death can increase the number oforgan donors. When the question about diagnosis of brain
death is a way to increase the number of organs for transplant
were asked, 13% answered strongly disagree, 19% disagreeand 18% answered not sure. This may be one of the reasonsfor the reluctance of doctors to diagnose brain death since
they do not view the diagnosis of brain death as a means toincrease the number of organ donors. In fact, when the
diagnosis of brain death is not implemented, potential donors
cannot be identified.
Suggestions
1) Doctors should be given adequate training andinformation on brain death which can be started from the
beginning of their undergraduate studies. Abidin et al said thatthey should understand the concept of brain death, and haveto be aware of this possibility when treating patients, and beable to recognize and diagnose brain death in the presence of29
a potential organ donor .
2) Change the attitudes of doctors to be more responsibleon the issue of brain death. Doctors should have a morepositive attitude towards brain death.

24

Sherine Hamdy, “Not Quite Dead: Why Egyptian Doctors Refuse
the Diagnosis of Death by Neurological Criteria.,” Theoretical
medicineandbioethics,
34(2013),
147–60<http://dx.doi.org/10.1007/s11017-013-9245-5>.
25
Kato Shinzo, “Organ Transplants and Brain-Dead Donors: A
Japanese Doctor’s Perspective,” Mortality, 9 (2004), 13–26<http://dx.doi.org/10.1080/13576270410001652514>.
26
a Kubler et al., “Attitudes to Brain Death and Organ Procurement
among University Students and Critical Care Physicians in Poland.,”Transplantation
proceedings,
41(2009),
1473–76<http://dx.doi.org/10.1016/j.transproceed.2009.01.109>.
27
Sherine Hamdy, “Not quite dead”.
28
Abidin et al.. p. 2
29
Abidin et al.. p. 6.

50

Eubios Journal of Asian and International Bioethics 25 (March 2015)3) Give exposure on brain death to the public through themedia and religious bodies. This will help to facilitate doctors
to provide information to the patient's family.
Conclusion
Doctors play an important role in the issue of brain deathand organ donation. Understanding and good behavior in theissue of brain death is very important. They should be
responsible for each task given. Continuing medical educationand increasing awareness are keys in increasing the numberof brain death diagnosis.
Acknowledgements
We are grateful to the Dr Lam Chee Loong and Dr. Ee Chin
Loh (Both are Senior Lecturer and consultant Palliative
Medicine) for their cooperation in this study and also to theMedical Ethics Committee, University Malaya Medical Centerfor the ethics approval (MECID.NO: 20144-158). The study isfunded by Postgraduate Research Fund, University of Malaya(PG032-2013B). It was presented at ABC15.
References
Abidin, Zada L Zainal, Wee Tong Ming, Alexander Loch, Ida
Hilmi, and Oliver Hautmann, “Are Health Professionals
Responsible for the Shortage of Organs from Deceased
Donors in Malaysia?,” Transplant international : official
journal of the European Society for Organ Transplantation,
26 (2013), 187–94 <http://dx.doi.org/10.1111/tri.12019>
Afonso, R C, D a B Buttros, D Sakabe, G C Paranhos, L M
C Garcia, M B Resende, and others, “Future Doctors andBrain Death: What Is the Prognosis?,” Transplantation
proceedings,
36(2004),
816–17<http://dx.doi.org/10.1016/j.transproceed.2004.03.065>
Al-Khader, Abdulla A, “The Iranian Transplant Programme:
Comment from an Islamic Perspective.,” Nephrol dialtransplant,
17(2002),
213–15<http://www.ncbi.nlm.nih.gov/pubmed/11812868>
Cohen, Jonathan, Sharona Ben Ami, Tamar Ashkenazi, and
Pierre Singer, “Attitude of Health Care Professionals to Brain
Death: Influence on the Organ Donation Process.,” Clinicaltransplantation,
22(2008),
211–15<http://dx.doi.org/10.1111/j.1399-0012.2007.00776.x>
Hamdy, Sherine, “Not Quite Dead: Why Egyptian Doctors
Refuse the Diagnosis of Death by Neurological Criteria.,”
Theoretical medicine and bioethics, 34 (2013), 147–60<http://dx.doi.org/10.1007/s11017-013-9245-5>Harrison AM, and Botkin JR, “Can Pediatricians Define andApply the Concept of Brain Death?,” Pediatrics, 103 (1999),
82
Jeon, K.O., B.N. Kim, H.S. Kim, N.-I. Byeon, J.J. Hong, S.H.
Bae, and others, “A Study on Knowledge and Attitude toward
Brain Death and Organ Retrieval among Health Care
Professionals in Korea,” Transplantation Proceedings, 2012,
859–61<http://dx.doi.org/10.1016/j.transproceed.2012.02.019>
Kubler, a, M Lipinska-Gediga, J Kedziora, and M Kubler,“Attitudes to Brain Death and Organ Procurement among
University Students and Critical Care Physicians in Poland.,”Transplantation
proceedings,
41(2009),
1473–76<http://dx.doi.org/10.1016/j.transproceed.2009.01.109>
LS, Hooi, and Lela Yasmin Mansor, Sixth Report of the
National Transplant Registry Malaysia 2009 (Kuala Lumpur,2011) <http://www.crc.gov.my/pdf/6th NTR report2009.pdf>
Mohamed Ismail Merican, “Guidline Of The Malaysia
Medical Council”, 2006
Mohd Rani Jusoh, “Mati Otak: Konsensus Pengamal
Perubatan,” in Sempadan Bioteknologi Menurut Perspektif
Islam, ed. by Shaikh Mohd Saifuddeen (Kuala Lumpur: Institut
Kefahaman Islam Malaysia (IKIM), 2005), pp. 139–52

Schaeffner, Elke S, Wolfram Windisch, Klaus Freidel, Kristin
Breitenfeldt, and Wolfgang C Winkelmayer, “Knowledge andAttitude Regarding Organ Donation among Medical Students
and Physicians.,” Transplantation, 77 (2004), 1714–18<http://dx.doi.org/10.1097/00007890-200406150-00015>
Sheerani, Mughis, Mian Zainul Sajadeen Urfy, Bhojo
Khealani, Junaid Patel, Qamarunnisa, and Suresh Rath,“Brain Death: Concepts and Knowledge amongst HealthProfessionals in Province of Sindh, Pakistan.,” Journal of the
Pakistan Medical Association, 58 (2008), 352–56
Shinzo, Kato, “Organ Transplants and Brain-Dead Donors:
A Japanese Doctor’s Perspective,” Mortality, 9 (2004), 13–26<http://dx.doi.org/10.1080/13576270410001652514>
Sui, W G, Q Yan, S P Xie, H Z Chen, D Li, C X Hu, andothers, “Successful Organ Donation from Brain Dead Donors
in a Chinese Organ Transplantation Center.,” American
journal of transplantation : official journal of the American
Society of Transplantation and the American Society ofTransplant
Surgeons,
11(2011),
2247–49<http://dx.doi.org/10.1111/j.1600-6143.2011.03694.x>
Youngner, S J, C S Landefeld, C J Coulton, B W Juknialis,and M Leary, “‘Brain Death’ and Organ Retrieval. A CrossSectional Survey of Knowledge and Concepts among HealthProfessionals.,” JAMA : the journal of the American Medical
Association,
261(1989),
2205–10<http://dx.doi.org/10.1001/jama.261.15.2205>

Current debates on“Standard of Care” in
Research on Human
Subjects in the Developing
World- Zoheb Rafique, MBBS, Mbioeth
Lecturer, Department of Biochemistry, Liaquat University of Medicaland Health Sciences (LUMHS), Jamshoro, Sindh, Pakistan
Email: dr_zohaib@hotmail.com

Introduction
For sometimes now, medical and bioethics communities
have been facing some difficult and divisive issues regarding
the ethics of the international research. These issues often
get fuel, when the interventional research is conducted on thepoor and vulnerable people in the poor developing countries.
The common term “Standard of the Care”, against whichsome of new interventions and inventions are tested in the
medical research has not been adequately defined. This term
is often taken to mean the “best proved treatment” for any of
the condition under investigation in any of the trial. The
debate regarding what constitutes a reasonable and fairstandard of care for subjects in the developing countries, andthose who participate in clinical trials has been raised by thecritics of the studies on transmission of HIV. Those critics also
argued that the placebo controlled trials of the new regimens
to prevent the vertical transmission of the HIV were unethicalbecause of the reason that they included the placebo arm
rather than “best proven treatment” which is available in thedeveloped countries. While some of the commentators
considered criticisms to be unbiased and associated withimperialistic attitudes. Although there was some justified
concern that the pressure from US Food and Drug
Administration could “dilute” the Declaration of Helsinki, andcritics were also confident that whether a trial was ethicalcould be deduced from text of a declaration. But someEubios Journal of Asian and International Bioethics 25 (March 2015)
declarations such as Declaration of Helsinki, that governinginternational research ethics are accepted like theconstitutions and needing interpretation. Also assuming what
is ethical, goes beyond merely following all the prescriptions
and also requires some moral reasoning (1). In this article, I
will discuss and comment on various debates on standard ofcare in human research in the developing world.
Discussion
Equal standards of medical care during research, reflecting
equal respect for the dignity of subjects, could be taken tomean any one or a combination of several requirements. It isarbitrary and not justifiable to select only one of these, forexample, which drugs are used to compare the standard ofcare in developed and developing countries. In the context ofsome disputed studies on the issue of HIV transmission, theforced emphasis on some “best proven drugs” having greater
considerations of whether those drug regimens can be safely
applied in the different settings. Also little attention has been
paid to fact there were so many differences between the
pregnant women in the developing countries, and in countries
where “best proven” treatment previously been established.
The pregnant women in the developing countries present tothe antenatal clinics at much later in the pregnancy than
women in original studies; they are often malnourished andanemic, and they often live within some context in whichbreast feeding has different implications for the newborn
infants. Moreover, the advice don’t breast feed would thencontradict years of the intensive education by WHO (World
Health Organization). Also concerning the use of theplacebos, the approach has also been simplistic. A placebo
arm is legal and justified in any trial requires some carefulconsideration of the potential benefits and harms in thosespecific contexts and they cannot be just simply deduced fromany general declaration. Of course it is very necessary to
acknowledge the fact that many of the placebo trials are often
unethical because they are performed largely for themarketing purposes just to show that “me too” drugs, haveeffects and actions greater than those placebo, and rather
than to study that they are better than the existing similar,
often cheaper, drugs. Also not only should nothing be done to
make it easier to perform such trials, but also each and every
effort can be made to reduce and decrease wasting time, andmoney on the “promotional studies”. In these situations where
there are some good reasons for the placebo controlled trials,
those should be considered on the merits rather than to beprecluded by any bluntly designed clause in the declaration.
To protect the host communities from exploitation, most of thecommentators argue that the efforts to improve the healthcare in developing countries should never ever involve
research that uses and utilizes less than “Worldwide best”
methods, and meaning best of methods available anywhere in
the world. Most notably, paragraph 29 of the Declaration of
Helsinki states: “The benefits, risks, burdens, andeffectiveness of a new method should be tested against thoseof the best current prophylactic, diagnostic, and therapeutic
methods”. The debate over the issue what standard of careshould be required for the individuals participating in the
research trials typically focuses on research conducted in thedeveloping countries by the investigators from the developed
countries. This focus makes some sense. Most clinicalresearch is conducted by investigators from developed
countries, and most communities lacking access to good
health care are located in developing countries. Researchers
from the developing countries can also exploit the hostcommunities. Also the communities in developed countries
lack access to the best methods available in the world, andincreasing the potential of being exploited. Then a complete
analysis, should also address the potential for exploitation51

and independent of nationality of investigators, and thegeographic location of any study (2). When the Helsinki
Declaration calls for “the best proven therapeutic method”
than does it mean [A] “the best therapy which is available
anywhere in world”? Or does it say [B] “the standard that is
applicable in that country in which drug trial is conducted”?
Helsinki is not very clear about this. But I must say that [1] adetailed and careful analysis of document and also its history
tells us that the best therapy standard was intended initiallyand primarily as the standard of medial practice. Thisconclusion yields another conclusion: that [2] “the best provenstandard of therapy must necessarily be the standard whichprevails in that country in which clinical trial is being carriedout.” In part, interpretations A and B often differ over what we
can call the question of relevant reference point. Alsoemphasizing this disagreement makes it appear as the
dispute hinges on question of whose medical practiceconstitutes relevant medical practice. So, the sides of thedebate are divided into the proponents of local standard ofcare and also the critics who often champion the global
standard of care. Framing the debate as the question of
relevant reference point, however, effectively obscures amore fundamental source of disagreement. To see this,consider a crucial assumption that lies behind following
argument. It is sometimes claimed that (1) because content of
the standard of care is often fixed by local reference point and(2) because the prevailing treatment for preventing thematernal-infant HIV transmission in those countries where
short-course AZT trials were conducted was no treatment at
all, that (3) use of the placebo does not fall below establishedstandard of care. Also it is important to see, however, that inorder for (3) to follow from (1) and (2), we have to adopt the
local reference point for standard of care (3). The ethics of theplacebo-controlled trials to prevent the perinatal transmissionof the HIV infection in continents like Asia and Africa havebeen widely debated. Some critics have argued that it is very
unethical to leave the patients untreated when the proven lifesaving treatment and therapy is being used in other parts of
the world. We note, that conduct of the placebo-controlled
trials in any developed country which would be unethical insome other developed country, has evoked some of furor thatsurrounded HIV perinatal transmission trials. The patients onother hand can choose not to take part in the trials.
Reluctance to participate in the trial may be greater when
there is some placebo control and the patients are asked todelay and forgo known effective therapy, also a large numberof the patients regularly agree to take part in the placebocontrolled trials of new agents. The perceived scientific valueof the trial can contribute to this decision. Although care must
be taken to ensure that manipulation of such considerations(e.g., by exaggerating scientific importance of trial), it seems
very reasonable to allow the potential study participants tobalance these benefits against some potential risk of theparticipation in this trial (4). Some of the observers noted
more than decade ago that the research was conducted in thedeveloping countries without the concern for the adherence ofinternational ethical principles regarding human subject
research contained in 1947 Nuremberg code and also in the1964 Declaration of Helsinki. This situation has not improved.
For example, two years back, the Food and Drug
Administration decided that the research studies submitted toit for the review purpose need no longer be bound by the
Declaration of Helsinki and they must follow only the industrysponsored guidelines for the good clinical practice also
outlined by International conference on the Harmonization.
What is the legal status of Nuremberg code and Declarationof Helsinki? Are they old outdated ethical rules that the
researchers might ignore with impunity? The question
remains open, but just as clinical trials attempting to interrupt

52

Eubios Journal of Asian and International Bioethics 25 (March 2015)

mother-to-child transmission of HIV in mid-1990s gave rise tosome continuing debate about the global standards of care
and also benefit sharing, so another mid-1990s research trial
in continental Africa has brought the international researchrules back to the center stage (5). In addition to discussing
recent debate and concerning international HIV research, also
we should focus on whether or not to randomize, as thecontrolled trials must be conducted for the researchers tolearn about intervention’s efficacy. The choice of the study
design is not between ethically questionable perfect trials that
produce the complete knowledge versus the imperfectdesigns that produce no knowledge. Moreover designs, suchas the observational studies, that resolve the certain ethicalquandaries are not necessarily free of the other ethicalproblems. One problem is that these studies can provide only
limited guidance for the public health policy. The other issue
is of informed consent, which is one of the corner-stones ofresearch ethics. The quality of the informed consent iscompromised when the potential patient participants believe,
wrongly, that the medical care is contingent on their agreeing
to participate in the research. Also it is important toemphasize the potential participants that neither their accessto the medical care, nor quality of care they receive, will beaffected in any of the respect by their decision. It issometimes very difficult to clarify this separation of theresearch from the medical care; the potential participants canbe made aware through the effective communication that thedecision about the research has no implications for their
medical interests. Some more challenging situation occurs
when the potential participants rightly believe that the medicalcare is contingent on their agreeing to enroll in the research(6).
Conclusion
In conclusion it is stated that every medical research project
involving human subjects should be preceded by carefulassessment of predictable risks and burdens in comparison
with foreseeable benefits to the subjects or to others.
Following the fundamental principles of bioethics may help toreduce ethical issues while conducting the clinical trials inresource poor countries. The issues of doing research in thedeveloping countries remains a worry and it need to befocused and debated. We have to sort out ethical problems
while conducting any research study. The researchers
following the ethical rules might not been able to solve allissues, but the situation might improve by the time if we try it
sincerely.
References
1. Solomon R Benatar, Peter A Singer. A new look atinternational research ethics. BMJ 2000; Vol. 321, 824-826.
2. David Wendler Et Al. The Standard of Care Debate: Can
Research in Developing Countries Be Both Ethical andResponsive to Those Countries’ Health Needs? AJPH 2004;
Vol. 94, No. 6, 923-928.
3. Alex John London. The Ambiguity and the Exigency:
Clarifying ‘Standard of Care’ Arguments in International
Research. Journal of Medicine and Philosophy 2000; Vol. 25,
No. 4, 379-397.
4. Susan S. Ellenberg, and Robert Temple. PlaceboControlled Trials and Active-Control Trials in the Evaluation of
New Treatments. Annals of Internal Medicine 2000; Vol. 133,
No. 6, 464-470.
5. George J. Annas, J.D. Globalized Clinical Trials andInformed Consent. NEJM 2009; 360; 20, 2050-2053.
6. Ruth Faden, Nancy Kass. Editorial: HIV Research,
Ethics, and the Developing World. AJPH 1998; Vol. 88, No. 4,548- 550.

Deficiencies in Japan’s
Medical Ethics Review
System- Akio Kanayama
Tokyo Metropolitan Kitatama College of Nursing
Part-time Lecturer, Tokyo Metropolitan Kitatama Nursing Colleges
Bureau of Social Welfare and Public of Health, Tokyo Metropolitan
Govemment, Japan
Email: m10702055@gmail.com

Abstract
A major factor in many cases of medical malpractice is thefailure of doctor–patient communication. Independent thirdparty organizations such as the HEC (Hospital Ethics
Committees) and the Clinical Ethics Consultation (CEC) aredesigned to address this problem in the United States andCanada. However, in Japan, open public access to similar
patient advocacy groups is less widespread. This deficiency
may be contributing to instances of illicit medical practices inJapan and posing as a significant impediment to therealization of “patient-centered health care.” Illicit activities
such as casually tampering with medical records in order toconceal incidents of medical malpractice occur frequently inJapan, as illustrated by several cases discussed in this paper.
The fact that investigations are conducted only after a serious
incident occurs reflects the inadequacy of existing ethicalsafeguards.
Key words: medical malpractice, hospital ethics committee,
clinical ethics consultation, informed consent, neutral
institution.
Introduction
Actions involving communication between medical
professionals and patients, including informed consent (IC),are a frequent cause of problems between medical
professionals and patients in modern healthcare. These
problems arise from the increasing complexity of healthcare
decision-making amidst rapid advancements in medical
technologies, a wider range of treatment options, andtransformations in social structures. Therefore, the availabilityof neutral third parties to investigate whether sufficient ethicalconsideration has occurred in decisions on treatment plans is
an important issue. This paper highlights the current status of
third-party ethics committees in Japan, where illicit activities
such as tampering with medical records continue to occur
with surprising frequency.
The current state and issues of ethics committees andclinical ethics consultations in Japan
Since the 2003 amendment to the Enforcement Regulationsof the Medical Service Law, which governs hospitals andresearch facilities in Japan, advanced treatment hospitals andclinical training hospitals have been required to “provide
patient consultation services.” This provision has led to theestablishment of patient consultation desks at all university
hospitals and all so-called “large” hospitals (i.e., those with atleast 400 beds). Ethics committees (ECs) began reviewing
cases from clinical settings, and hospital ethics committees
30(HECs)
designed to address ethical issues in clinicalpractice were also formed. HECs in the western countries arecomposed of physicians, nurses, medical social workers,
30

Chris Hackler and D. Micah Hester, “What Should an HEC Look and
Act Like?” in D. Micah Hester (ed.), Ethics by Committee: A Textbook
on Consultation, Organization, and Education for Hospital Ethics
Committees (Maryland, Rowman & Littlefield, 2007), 6–12.

Eubios Journal of Asian and International Bioethics 25 (March 2015)
lawyers, clergy, other experts, and members of the generalpublic such as patient representatives. HECs have three main
roles: (1) to provide ethics training to hospital staff; (2) tocreate hospital guidelines including a code of ethics and toprevent ethical incidents through reviews; and (3) to review
ethical issues regarding individual clinical research andmedical practice within the hospital and provide clinical ethics
consultations (CECs) to address these issues. The number ofhospitals establishing ECs (under various names) increased
rapidly after the Japan Council for Quality Health Care
(JCQHC) adopted the presence or absence of an EC as acriterion in its hospital evaluations.
However, the actual state of ECs differs considerably fromthat in the United States, which was intended to serve as amodel for Japan. ECs are merely formal committees formed
to superficially commit to World Health Organization (WHO)31
guidelines and JCQHC requirements. In practice, they areoften monopolized by medical professionals, corporate
lawyers, or university stakeholders.
Furthermore, the HECs intended to address ethical issues
are not clearly distinguished from research ethics committees(RECs) designed to oversee traditional clinical research.
Similar to the United States, Japan has institutional review
boards (IRBs) to supervise the conduct of clinical trials, but
Japan’s IRBs do not have the same responsibilities as their
U.S. counterparts. Rather, a complicated system exists
whereby RECs are responsible for work that would generally
constitute the scope of IRBs in the United States.
For example, the U.S. IRB system reviews all clinicalresearch in facilities based on statutory regulations However,
IRBs in Japan are responsible generally for ensuring theapplication of good clinical practice (GCP) in clinical trials thatare assessed under the country’s Pharmaceutical Affairs Law.
Clinical research in Japan, other than clinical trials, is instead
reviewed by the REC of each hospital or facility, not by an
IRB, and is not subject to such strict statutory regulations or
32
monitoring as in the United States.
These problems can be elucidated by comparing several
Japanese studies regarding ECs. For example, in a 1995–
1996 study of general hospitals, only 24.3% of hospitals had
33
an EC. This number rapidly increased after the JCQHC
added its EC criterion to hospital evaluations since 1995. In a
2006–2007 survey of hospitals certified by the JCQHC, 76.4%
34
of hospitals had an EC. Nevertheless, according to a 2004–
2005 survey of clinical training hospitals, only 24.7% offacilities responded that they had a structure in place to offer
clinical ethics consultations (CECs), which relate specifically35
to ethical issues in clinical settings.
This information underscores that Japan’s HECs are inplace only as a formal measure due to external pressure andthat it is difficult for these HECs to respond pragmatically
31

The WHO guidelines state that research ethics committees should
include at least one individual who is not a scientist and one individual
who does not belong to the institution in question. See Sengupta
Sohini and Bernard Lo, “The Roles and Experiences of Nonaffiliatedand Non-scientist Members of Institutional Review Boards,”
Academic Medicine 78, no. 2 (2003): 212–18.
32
K. Inaba and N. Nagao, “Functioning Clinical Ethics Committees
within Hospitals,” Journal of Nursing Management 13, no. 4 (2003):
263–64.
33
A. Akabayashi, “The Functions of Ethics Committees: Roles andResponsibilities,” in A. Asai et al. (eds.), Medical Ethics (Keiso
Shobo, 2002), 277–88.
34
H. Nakao et. al., “The Current Status of Recognition and Solution of
Ethical Problems in Hospitals in Japan: From the Nursing
Administrators’ Point of View,” Journal of the Japan Association for
Bioethics 18, no. 1 (2008): 75–82.
35
N. Nagao, Y. Takimoto, and A. Akabayashi, “Survey on the Current
State of Hospital Ethics Committee Consultations in Japan,” Journalof the Japan Association for Bioethics 15, no. 1 (2005): 101–6.

53

when serious clinical ethics problems arise in medical
settings, because the distinction between HECs and RECs isambiguous. Because they tend to exist only as formalities,
they are less likely to have to cooperate with CECs, which
address ethical practice in clinical settings. In other words,
HECs and RECs, or IRBs in extreme cases, in Japan are
currently lumped together with ECs. Although these bodies
function as independent committees under the hospital board,in reality, they are often the same in terms of their members
and other factors. According to one survey, many RECs and
IRBs at facilities and hospitals serve the same function as
36
HECs.
The cases discussed in this paper underscore that thecurrent situation surrounding ECs in Japan is preventing
ethical problems from being addressed in clinical settings or
making it impossible to act before situations becomes serious.
Although still small in number, CECs at some institutions in
37
Japan, such as the Center for Biomedical Ethics and Law,
38
the University of Miyazaki, and its associated hospital, and39
the Graduate Schools of Kumamoto University,
havedemonstrated a high level of practice and produced useful
research findings. Expansion of CECs into advanced
research centers is still awaited.
The lack of corresponding third-party and neutral
perspectives is the greatest and most common problem of theEC system in Japan. Further, I will discuss the role of CECs,
which address the ethical problems of patients and medical
settings from a closer perspective, in a case study offering
practical solutions to these problems.
The purview of CECs as neutral third parties
CECs were initially established in the United States in thelate 1960s and evolved with the rapid increase in HECs in the
1980s. CECs were the consequence of the advancement,
development, and spread of medical technologies, which
resulted in more complex decisions regarding treatment. Their
presence was also due to a growing emphasis, which was
influenced by broader human- and civil-rights movements, on“patient-centered healthcare”; this would respect the rights ofpatients, particularly their right to self-determination, in
medical settings.
In an epoch-making event, in 1983 the U.S. President’s
Commission for the Study of Ethical Problems in Medicine
and Biomedical Research encouraged the establishment of
HECs to evaluate and resolve cases demonstrating ethicalproblems. HECs existed in more than 60% of U.S. hospitals
40
by 1987, compared with a mere 1% five years earlier.
Furthermore, 81% of general hospitals and all hospitals with
36

Japanese Society of Intensive Care Medicine Ethics Committee,“Survey on the Current Situation of Clinical Ethics at Facilities withwhich Japanese Society of Intensive Care Medicine Counselors are
Affiliated,” Journal of the Japanese Society of Intensive Care
Medicine 20, no. 2 (2013): 307–19.
37
The University of Tokyo Center for Biomedical Ethics and Law wasamong the first to raise awareness of HECs and CECs in Japan; itholds educational activities and launches CECs. Y. Takimoto,“Building a Clinical Ethics Consultation System,” Journal of the Japan
Hospital Association 71, no. 3 (2012): 222–23.
38
At the University of Miyazaki, a clinical ethics division wasestablished at the university hospital, with a “medical ethics
committee” set up as a HEC based on clinical ethical guidelines. A
team of “clinical ethics coordinators” handles ethics consultations. K.
Itai, “Ethics Consultation and End-of-Life Discussion: Through the
Implementation of Clinical Ethics Consultation,” Journal of Japanese
Scientists 42, no. 11 (2007): 16–21.
39
A. Asai, “The Question of Ethics Consultation,” Journal of theJapanese Society of Internal Medicine 101, no. 10 (2012): 3012–18.
40
J. E. Fleetwood, R. M. Arnold, and R. J. Baron, “Giving Answers or
Raising Questions? The Problematic Role of Institutional Ethics
Committees,” Journal of Medical Ethics 15, no. 3 (1989): 137–42.

54

Eubios Journal of Asian and International Bioethics 25 (March 2015)at least 400 beds had an HEC by 2002, and CECs spread
41
concurrently to the same extent.
Meanwhile, an initial problem with HECs was identified: thecriteria underlying their authority to deal with ethical issues inclinical settings were incomplete. Specifically, there were
problems with maintaining their neutrality as a third-party
entity coupled with the lack of programs to train people toperform the function of HECs. However, in the late 1980s,
CECs broke away from HECs and improved their humanresources by implementing professional training programs inclinical ethics at universities and other institutions. CECs
currently function as neutral third parties providing
professional clinical ethics consultants. Their function is to
discuss ethical issues with medical professionals, and they
are recognized in many clinical settings as important arbiters.
Inappropriate medical practices in Japan caused byinadequate HECs and a lack of CECs
I will now refer to a case in which the inadequate functioningof HECs and the lack of involvement of CECs has
encouraged illicit and unethical medical practices in Japan. In
this case, I received a request from a consultant, who wasserving as a private CEC and as a hospital chaplain,
regarding what appeared to be a case of forged amnion
42
transplant surgery, based on treatment information available
in the Ophthalmology Department of Gunma University
Hospital.
When I examined the patient’s narrative about their diseaseas provided by the CEC, I noticed some discrepancies in the
medical professional’s narrative of a conference held with thepatient following differences that arose between the patient’s
understanding and that of the medical professional after
surgery. Based on these discrepancies, I asked to look at thehospital’s medical records and found that the patient
information referral document for the doctor had been forged.
This experience confirmed that CECs are effective when
ethical issues arise regarding medical professionals in
hospital settings.
This case was presented at the 26th Annual Meeting of theJapan Association of Bioethics (October 25, 2014); however,
the CEC investigation was still underway at the time and theconference between the parties involved—including thedoctor in question—had not yet taken place, so the name ofthe hospital was withheld.
However, in a CEC meeting on April 4, 2014, the hospital
ultimately admitted that the medical information in question
was not real, apologized to the patient, and agreed to asettlement between the parties.
Following this incident, on November 14, 2014, theestablishment of a third-party investigative committee wasannounced for investigating advanced laparoscopic
procedures conducted between 2011 and 2014 at Gunma
43
University Hospital that had resulted in at least eight deaths.
These surgeries were conducted with insufficient IC andpreoperative examination, were not covered by health41

H. Sakurai et. al., “The Necessity of Layperson Participation in
Ethics Committees: A Framework for Commitment,” Journal of
Medicine, Life and Ethics, and Society 8 (2009): 1–16.
42“False Medical Records in Ophthalmology,”Yomiuri Newspaper,
February 8, 2015.
Amnion transplant surgery is a treatment for refractory eye disease inwhich an amnion (the membrane that envelops the amniotic fluid that
nurtures the fetus) is transplanted. Because this is an advanced
medical procedure, only 17 facilities (as of 2010) throughout thecountry could perform this surgery based on provisions by the
Ministry of Health, Labour and Welfare.
43“Deaths Following Laparoscopic Surgery,” Yomiuri Shimbun,
November 14, 2014, morning edition.

insurance, and should have been reviewed by the EC under
the hospital’s bylaws.
These laparoscopy cases had many points in common withthe amnion transplant case. For example, the surgeon in thelaparoscopy cases obtained insufficient IC from the patientsand did not indicate in the medical records that these wereadvanced procedures not covered by health insurance. The
testimonies of the surgeon who “provided an explanation” andthe bereaved family who “did not receive an explanation”
differed. Furthermore, the medical records did not list theprocedure as laparoscopic surgery, but instead as a normal
laparotomy, referred to vaguely as “resection of two central
segments of the liver.” As in the amnion transplant case, thetruth about what occurred during surgery could be revealed
44
only from the nursing records. In a press release about thelaparoscopy cases, the hospital director commented that “thesurgeon was only partially aware of the need to fileapplications.” However, the laparoscopy cases were not the
only surgeries conducted with advanced medical procedures
and without health insurance in 2013; the amnion transplantcase also had these characteristics. Despite this, there has
been no evidence of the EC reviewing these cases among thedisclosed information.
That Hospital has admitted in its final report is at fault in
relation to the death of all eight patients who died after
undergoing liver operations using a laparoscopy. Also the
Hospital’s investigation into a series of deaths of patients
following liver surgery by one of its doctors was insufficient,
lawyers for bereaved family members said, stressing acriminal charge against the operating surgeon is in the offing.
At a press conference, the group of lawyers said thehospital did not conduct a thorough investigation into thedirector at its second surgical department and the surgeon inquestion, and thus failed to uncover the whole picture of how
and why the fatal operations were allowed to happen. A groupof lawyers was set up by eight legal advisers specializing inmedical matters and helping those who fall victim to medical
malpractice. The bereaved family members of the patients
who died following laparoscopic and open abdominal
operations at the hospital have consulted the lawyers. Upon
receiving formal requests to examine the cases of twopatients, the lawyers investigated them in cooperation with agastroenterological doctor knowledgeable about laparoscopic
surgery at a university hospital in Tokyo. Based on theexpert’s assessment, the group of lawyers raised several
questions over the investigative report compiled by thehospital, saying the hearings with the surgeon and thedepartment’s director were insufficient.
Also regarding the 10 patients who died after having open
abdominal operations, the hospital announced at a press
conference last week that one of them was posthumously
confirmed not to have developed cancer, but the surgeon did
not tell the patient’s family about this and entered false
disease information on the patient’s death certificate. In
addition to lodging a criminal complaint against the surgeon,
the lawyers will consider demanding the administrative
45
punishment of having his medical license revoked.
These incidents suggest that hospital bylaws do not function
effectively, raising concerns that medical professionals’
responsibility to apply to ECs is normally neglected orignored.
On the other hand, the educational philosophy of Gunma
University School of Medicine is “reforming the curriculum
under the shared slogans of science (scientific knowledge
44“Inadequacies in the Medical Records of Two of the Eight Patients
Who Died,” Yomiuri Shimbun, January 17, 2015, morning edition.
45“Forgery of the death certificate by a doctor.” Yomiuri Shimbun,
Marth 4, 2015, morning edition.

Eubios Journal of Asian and International Bioethics 25 (March 2015)46

and skills), ethics (ethical standards and social contribution)47
and skill (medical and research skills).” The university alsooffers a major in medical philosophy and ethics. The
dysfunction of the HEC and the inadequate CEC at Gunma
University Hospital are the primary causes of the fact that theoutcomes of advanced medical ethics instruction at theuniversity are not reflected in the clinical practice of thehospital. The interim report on the laparoscopy cases
48
conducted by the hospital’s accident investigation board
shows that the complaints of the patients and their families
were not sufficiently addressed. It is quite likely that if the
CEC had at least been able to present patient complaints
regarding informed consent to the HEC as a neutral third
party, some of the incidents could have been prevented.
Detailed review of the case study
I will now describe in further detail the amnion transplantcase study.
Ms. I is a 47-year-old woman and a devout Christian. She
lives with her 90-year-old mother and has no other family.
She has very weak eyesight in both eyes due to a congenital
disorder. She visited many university hospitals for treatment
as a child, but there was no improvement in her condition.
Since age seven, she has undergone regular testing at
ophthalmology clinic D to stabilize her visual acuity at about
0.05. Ms. I worked at a facility for persons with disabilities
while receiving assistance with activities of daily living.
However, at age 32, she developed Crohn’s disease and wasadmitted to a local general hospital, Hospital E. Thereafter,
her eye symptoms worsened due to complications and sheunderwent treatment with eye drops and ointment at theophthalmology department of the same hospital. At age 44,
Ms. I developed lung cancer; aggressive therapy was notindicated and there was no hope for a cure; therefore she
received only palliative care. Initially, she was given a life
expectancy of about three years, but no exacerbation ormetastasis of the cancer has been observed as of this writing,so she is still undergoing treatment.
Ms. I wanted to be able to read the Bible, with the aid of amagnifying glass, during her remaining life. Due to severe
nystagmus (an abnormal form of eye movement in which theeyeball moves back and forth involuntarily) that made reading
characters difficult, she was referred to Gunma University
Hospital, which supports amnion transplantation, by Dr. M. atthe ophthalmology department of Hospital E. She wasadmitted to Gunma University Hospital on June 24, 2013 andunderwent surgery the following day.
According to Ms. I, her IC on admission contained an
explanation that “advanced medical treatment not covered byinsurance consisting of ‘amnion transplant for intractable eyedisease’ was scheduled.” In light of the previously mentioned
laparoscopy cases, this procedure likely required review by
the ethics committee; however, the medical records did notstate that a review took place. Moreover, Ms. I learned from afemale doctor, during the preoperative IC explanation, of asudden change in the surgeon performing the operation. She
became anxious, but she reluctantly consented. Surgery was
performed under local anesthetic, so the patient was able to46

Gunma University Graduate School of Medicine, Social
Contribution Program, 2012 Graduate School “Public Seminar,”
http://www.pref.gunma.jp/contents/000232377.pdf (last accessed on
January 7, 2015).
47
Gunma
University
SchoolofMedicine
homepage,
http://www.gunma-u.ac.jp/html/section_3.html
48
Gunma University Hospital, “Laparoscopic Liver Resections,Interim
Report,”http://hospital.m ｙ ed.gunma-u.ac.jp
wpcontent/uploads/2014/12/fukukuukyou_tyuukan_houkokusyo..pdf (lastaccessed on January 9, 2015).

55

hear the doctors’ conversation. At the start of the surgery, thesurgeon, Dr. Y, said, “We should just sew her eyes shut
because she can’t see anyway,” to which the assisting Dr. J
replied, “Yes, of course.” This shocked the patient. After thesurgery, Dr. J told Ms. I, “We performed conjunctival graft
surgery because you were not eligible for an amnion
transplant.” Ms. I, who had not been told of the conjunctival
graft surgery in the IC explanation, became worried. She
wondered why she had not received an amnion transplant
and was hurt by the doctors’ heartless words. She did notknow what to do because none of the doctors or nurses would
listen to her. She explained all this to me in a telephone
conversation. I rushed to the hospital at her request andasked for an explanation from the ward nurses, at which point
Dr. J came to the hospital room to explain.
I asked Dr. J why Ms. I was only told during the
preoperative IC discussion that her surgery at Gunma
University Hospital was for an amnion transplant. Dr. J.
responded, “She should have been told that an amnion
transplant might not be possible. That’s why we performed
conjunctival graft surgery.” At that point, Ms. I interjected
emotionally, “I have no memory of being told that!”
In an attempt to compare the narratives of Ms. I and Dr. J, I
launched a CEC investigation. Initially I believed that thedoctors merely had not sufficiently disclosed their intentions to
Ms. I in the IC explanation. However, during the course of theinvestigation, I discovered that a much more serious ethicalfailure might have occurred. My conversation with Dr. J and
Ms. I is reproduced below.
Author: “Dr. J, Ms. I claims that she ‘did not hear anything
about conjunctival graft surgery,’ so may I ask how you
explained Ms. I’s procedure to her in the preoperative
informed consent explanation?”
Dr. J: “I explained it to her properly. Look [showing the
medical records in his left hand], here it shows that we
explained it to her properly with images and all. Ms. I haseven signed her name!”
Author: “I see. Incidentally, was anyone else present when
Ms. I received the explanation?”
Dr. J: “It was just the patient.”
Ms. I: “It was just me.”At this point I believed that the preoperative IC explanation
had been inadequate. However, because the patient was stillin the care of Gunma University Hospital, I waited until thepatient was transferred to Hospital E the following day tocontact the Gunma University Hospital Medical Affairs
Division. Following discussions with the parties involved,
including the surgeon, I conferred with Ms. I regarding theneed for a CEC investigation.
The reason for suspected fraud in the IC explanation wasthat Dr. J’s remarks were clearly contradictory. Ms. I has
almost no visual acuity and usually requires a magnifying
glass when reading books and other texts. However, she had
not brought a magnifying glass to the hospital, so it was
unlikely that Dr. J had given explanations with images.
Consequently, I suspected that Dr. J was concealing the factthat she had not provided a sufficient IC explanation.
However, the medical records from the day after surgery
indicated that Dr. J had not given any preoperative IC
explanation at all. Rather, another female doctor had provided
the explanation. Due to her poor eyesight, Ms. I had not beenable to distinguish her from Dr. J and had not evenconsidered that Dr. J was pretending to have been the one
who provided the IC explanation. On the other hand, if Dr. J
had not actually provided the informed consent explanation,then it seemed likely that Dr. J’s remark that she had
explained the procedure with images (to a person who could

56

Eubios Journal of Asian and International Bioethics 25 (March 2015)

not see) was fabricated, and that Ms. I was telling the truth
when she said she did not receive an explanation.
Ms. I, who was unconvinced by Dr. J’s explanation,complained to her attending physician, Dr. M, at Hospital E,
and Dr. M then made inquiries into the content of her surgery
at Gunma University Hospital. The medical informationreferral document sent by Gunma University Hospital included
falsified content signed by the surgeon, Dr. Y, claiming that“amnion transplant surgery had been performed for the righteye.”
Still suspicious, Dr. M made another inquiry but received no
response. Despite feeling dissatisfied, Ms. I was discharged aweek later and continued to visit Gunma University Hospitalon an outpatient basis. However, she was never examinedagain by Dr. Y or Dr. J again. On March 18, 2014, Ms. I
finished outpatient treatment at Gunma University Hospitaland was once again referred to Hospital E. Her medical
information referral document at this time stated, “R)
Conjunctival graft surgery (Dr. Y).”
With the patient’s consent, I obtained copies of these twodifferent medical information referral documents from Hospital
E. Consequently, forgery of medical information by Dr. Y wassuspected, and I contacted the Medical Affairs Division of
Gunma University Hospital. On April 4, I held a CEC meetingwith Ms. I and the female doctor (Dr. K) who had provided thepreoperative IC explanation, two staff members from theMedical Affairs Division, and the chief nurse. However, Dr. K’s
statements in this meeting were also implausible, and after
consulting Ms. I, I made a request for the full disclosure of all
medical records. The conversation occurred in the following
manner:Author: “You are indeed the person who provided the IC
explanation?”
Dr. K: “That is correct.”
Author: “On the day of the surgery, the male doctor claimed
that he provided an explanation with images.”
Dr. K: “That must be Dr. J, who assisted [with the surgery].”
Author: “So Dr. J had not met with Ms. I before the surgery,is that correct?”
Dr. K: “I think so.”
Author: “What about the surgeon, Dr. Y?”
Dr. K: “He was out of the country for an overseas training
program, so he did not return until the end of October.”
Author: “So when would this case be reviewed by thehospital’s Ethical Review Board?”
Dr. K: “That would be after Dr. Y returned.”
Author: “Incidentally, why did this inaccuracy appear in the
medical records?”
Dr. K: “Due to the large number of referrals and their
responses that I write every day, I do not know if Dr. Y wrote
the records himself, even if he did sign them. It is possiblethat one of the residents wrote them on his behalf.”
Author: “That is strange. When Ms. I went to the trouble ofcomplaining to the doctor who originally referred her due toher dissatisfaction with the surgery, her original doctor shouldhave inquired about this on her behalf. You should also haveheard about the problems on the day of the surgery from Dr.
J. This is bad conduct toward Ms. I, but she is also a claimant
who asked her attending physician at Hospital E to ‘inquire
into the content of her surgery’ following her demand to know
‘why she was not given the amnion transplant’ she requested
from the hospital. Is it normal for Dr. Y to leave responses tosuch important issues to others? I do not think it likely that asupervising doctor such as Dr. Y would ask others to fill inrecords on his behalf without properly checking them,assuming that he had residents or subordinates. If you, Dr. K,
were to do something like that during your training, wouldn’t
your supervising doctor get angry?”Dr. K: “That is true.”
Medical information obtained later from the disclosed
medical records (excerpts from parts related to the case)
Before surgery: as of April 9, 2013
(According to the medical institution’s medical informationreferral document sent to Gunma University Hospital
Department of Ophthalmology by Dr. M of Department ofOphthalmology, Hospital E)
Reason for referral: Request for advanced medical
treatment for corneal findings in the right eye.
Name of conditions: Microphthalmia, weak eyesight,
nystagmus, (right eye) corneal thinning
Medical history: Congenital corneal disorder present frombirth, visits to University Hospitals N and K until age 7 forweak eyesight. No history of surgery.
First visit to Hospital E in 1998, at which point nystagmus
was marked and visual acuity was poor (visual acuity at thetime of initial examination was 0.03 for the right eye and 0.02
for the left eye).
The patient had developed corneal opacity and partial
calcification. The patient experienced epithelial detachment of
the center of the right cornea in July 2005 and January 2011,
which was treated using eye drops and ointment both times
and visibly improved. The current case of epithelial
detachment of the center of the right cornea started on March
25, 2013 and the cornea is thinning, so please look into
whether this patient is eligible for an amnion transplant.
The disclosed medical records supported Ms. I’s abovementioned narrative. Medical records from June 24 also
revealed the confusion at the time of surgery related to thechange in surgeon, as claimed by Ms. I. Moreover, a section
regarding Ms. I’s complaint that she had been told only about
the amnion transplant was included in the nursing records
from the time of admission. The nurses’ assessment was“Note: Amnion is to be transplanted due to the worn state of
the cornea.” This suggests that the nursing department atleast knew that Ms. I had been admitted for “amnion
transplant surgery.”Moreover, the surgical records from June 25 state that
“Conjunctival graft surgery was performed for limbal stem cell
dysfunction in the right eye.” However, a note reading, “Right:
amnion transplant surgery was performed” remains a few
pages into the surgical records sent to Dr. M at Hospital E
following his inquiry. When the medical records were once
again sent to Hospital E on March 18, 2014, the medical
information referral document written by an outpatientphysician, Dr. W, ended with “R) Conjunctival graft (Dr. Y)[sic].” The report by Dr. W was consistent with the surgicalrecords. On the other hand, it was impossible to determine
from the medical records whether Ms. I was eligible foramnion transplant surgery. However, it was worrisome that noapplication was made to the ethics committee for a possible
advanced medical procedure not covered by healthinsurance. On the day of the surgery, the amnion had alreadybeen prepared, so if surgery had been performed with thisamnion, it would have been an inappropriate surgery
performed without review by the ERB and may have been in
violation of the hospital’s regulations.
Thereafter, Ms. I resumed treatment at Hospital E, but
returned to me seeking advice after she received the following
verbal harassment from Dr. M during a visit to Hospital E atthe end of April: “Why did you request the disclosure of your
medical records? Do you intend to sue?! This is not what I
wanted!”A patient has the right to request disclosure of medical
records. Furthermore, Ms. I had complained to both hospitals
stating her desire “to know the truth. If they were wrong I wantEubios Journal of Asian and International Bioethics 25 (March 2015)
them to apologize. I also don’t want any other patients to go
through what I went through.”Despite this, the remarks by Dr. M regarding the request fordisclosure of medical records may have been the result ofpressure placed on the doctor due to the relationship between
Gunma University Hospital and Hospital E. As is the case atother hospitals in the region, approximately two-thirds of the
full-time doctors working at Hospital E are graduates ofGunma University and the hospital relies on resources from
Gunma University Hospital for their specialized outpatient
clinic and hospital shifts. This relationship may have caused
Dr. M to feel the need to protect his professional colleagues atGunma University Hospital.
I indicated to Ms. I that I would like to meet with Dr. M andask him about the intention behind his remarks. However, Ms.
I said that she was still receiving treatment from Dr. M andpreferred that I not interview him. Therefore, instead this fact
was conveyed to Gunma University Hospital and a request
was made to show consideration to Hospital E.
Thereafter, on November 4, a CEC meeting was held,
involving a total of six people: three hospital staff, Dr. Y, thechief nurse, a staff member from the Medical Affairs Division,and me, with Ms. I and her family in attendance. At themeeting, Dr. Y apologized for placing false information in the
medical records, and Ms. I accepted the apology with arequest that the hospital not put any other patients throughwhat she had experienced.
The need to develop practical HECs and CECs in JapanAs stated earlier, various ethics committees other than IRBs
and RECs exist at many university hospitals and otherinstitutions. However, parties affiliated with the institution,
including doctors, account for the majority membership ofthese committees’. In many cases, these committees do nothave a single expert on medical ethics, let alone experts in
psychology, philosophy and ethics, or pastoral care as in theWest. It is, therefore, not surprising that these committees areunable to deal with serious incidents such as the laparoscopy
cases. Institutions such as Gunma University Hospital instead
establish accident investigation boards formed by third parties
to conduct investigations. However, the interim report on thelaparoscopy cases states, “Even if an ethical review system isin place at a hospital, no reviews can be conducted if noapplications are made by clinical departments. It must be said
that in these incidents, the clinical departments were naïve intheir awareness of this necessity. A structure that allows fortraining and guidance to be provided to all clinicaldepartments should be established by expanding thevariance reporting system and providing easily understood
ethical review manuals.” It is difficult to fulfill theserecommendations if no ethical review system has been
established.
Amidst these serious incidents, hospitals have exhibited aproblematic attitude in that, in most cases, improving just twoof the stipulated roles of HECs, namely (1) the reporting
system and (2) training and guidance using a manual, in a
top-down manner is considered sufficient. The attitudeunderlying this approach could be summarized in thefollowing way: “If the formats of training and manuals are atleast established, the hospital will escape responsibility for
any recurring incidents by pushing the responsibility onto theparties in question.” The dysfunction of HECs in fulfilling their
third role, reviewing and dealing with problems related toindividual clinical medical practices, should be highlighted andaddressed. Furthermore, ethical practices should be ensured
from the bottom up by learning from other countries about
how CECs can function as an effective safeguard of patient
rights.

57

Given the current circumstances, where there is no bottomup perspective on clinical ethical problems, if a similar
incident occurs in the future, medical professionals are likely
to trivialize the problem into individual liabilities and the HEC
would serve simply to protect the hospital. If medical
professionals do not change this outdated pattern of behavior,
they cannot be said to have delivered patient-centered care inany meaningful sense.
In other words, Japanese healthcare today requires theestablishment and operation of more practical HECs and
CECs. HECs should include expert ethicists, psychologists,
philosophers, nurses, allied health professionals such as
medical social workers, and members of the general public
including patient representatives, as is the case in theWestern countries. At the same time, well-managed CECs
formed around ethics consultants should properly address
ethical problems that arise in clinical settings, thereby
contributing to the realization of patient-centered care.

A Re-examination of Organ
Sale and its Challenges- Daniel J. Hurst, ThM, MDiv
PhD Student, Duquesne University, Center for Healthcare Ethics
300 Fisher Hall, 600 Forbes Avenue, Pittsburgh, PA USA 15282
Email: hurst.danielj@gmail.com

Abstract
There is a global consensus of ethicists, politicians,
physicians, and international documents that reject any sort ofmarket in human organs. Indeed, this issue has received
much attention in the literature in the past few decades, withthe majority of commentators placing a high correlation
between the sale of organs and financial exploitation. While
this argument may be tenable, this analysis seeks to draw out
further implications of organ sale, including the idea of
moralistic exploitation and the concept that providing a market
in a nonmarket good may crowd out certain morals that weshould care about. This article will initially discuss the issue ofmoralistic exploitation, drawing implications from the 2005
UNESCO Declaration on Bioethics and Human Rights andwill conclude with applying Michael Sandel’s concept thatmarkets crowd out morals to the issue of organ markets.
Keywords: organ sale; UNESCO; Iran; exploitation;commodification
1) Introduction
Organ transplant has become widely practiced worldwide
withtheadventofcertainimmunosuppressive
pharmaceuticals. With an increase in transplant, a criticalshortage of organs for transplant has developed a market inboth licit and illicit forms of organ trade. There is a global
consensus of ethicists, politicians, and physicians that reject
any sort of market in human organs—regulated or otherwise.
Indeed, the very possibility of creating such a for-profit market
in organs, particularly kidneys, for transplantation ignites inmany people feelings of significant moral repugnance. Theirprimary point of contention is that organ sale is exploitative.
That is, citizens of rich countries are often cited as preying onvulnerable populations from poorer states. Thus, the potential
for exploitation, which is perceived to always underlie
commerce in human organs, is held to trump the possibility of49
increasing life-saving transplants.
49

Mark J. Cherry, “Is a Market in Human Organs Necessarily
Exploitative?” Public Affairs Quarterly 2000; 14 (4): 337.

58

Eubios Journal of Asian and International Bioethics 25 (March 2015)

The vast majority of literature on the matter of organ tradeplaces a high correlation between the sale of organs andfinancial exploitation. The argument, tenable as it may be,asserts that persons in underdeveloped countries are coerced
into selling their organs by the offer of profuse monetary sums
and extravagant gifts. Because these arguments have been
advanced in scores of articles and international documents,
this essay will not delve greatly into this arena. Rather, thisessay seeks to draw out further implications of organ sale,most notably, the ideas of moralistic exploitation and the idea,
borrowed from Harvard Professor of Government Michael
Sandel, that markets crowd out morals. Thus, a central
question here is not what forms of commodification ought tobe legally restricted but what forms of commodification are
morally objectionable. The moral status of a contested
commodity should figure as one consideration among others
in determining its legal permissibility. This essay holds thatthat a market in human organs would not be ethically soundfor it would be exploitative in manners other than financial,
particularly morally. Indeed, great societal harm could be
produced from such a legalized system. This article will
initially discuss the issue of moralistic exploitation, drawing
implications from the 2005 UNESCO Declaration on Bioethics
and Human Rights, will then address further arguments infavor of organ sale, including arguments from autonomy andthat a limited supply demands a market in organs. Finally, thearticle will conclude with providing further considerations onmarkets and the idea that markets tend to crowd out morals.
2) Moralistic Exploitation: Improper Commodification
Assessing whether organ sale involves harmful exploitation
requires one to take an all things considered judgment. The
question is not truly whether or not organ markets have
harmful elements, as most market systems have harmful
features, but whether the costs considerably outweigh thebenefits so that it should not be recognized as an acceptable
50
social practice. For the purposes of this essay, exploitation
is defined as the act of treating someone unfairly in order to51
benefit from their work. Organ sales may be exploitative if
one party benefits considerably more from an exchange that
only marginally advantages, or even leads to the detriment, of52
the other. For example, in a Marxist theory of market
exploitation, exploiters command considerably more value
from an exchange than they bring to the transaction, while forthe exploited the opposite it true. Hence, by such definitions,organ vendors are exploited financially if they receive
significantly less value from the transaction than the worth of53
the transplant to the recipient.
It has been well documented that vulnerable populations inresource-poor countries are now a major source of organs forrich patient-tourists who are prepared to travel and have the54means to purchase organs.
Citizens of high-income
countries are driven to developing countries in search of
55
organs. The World Health Organization has estimated thataround 10,000 organs are sold on the black market every
year. As stated, the compiled data indicates that the organexporting countries are primarily developing states, comprised
mainly of India, Pakistan, and China, while the major organimporting countries are the more affluent Australia, Canada,

50

Cherry, “Is a Market in Human Organs Necessarily Exploitative?”339.
51
Cherry, p. 339.
52
Cherry, p. 345.
53
Cherry, pp. 345-46.
54
Alireza Bagheri and Francis L. Delmonico, “Global Initiatives to
Tackle Organ Trafficking and Transplant Tourism,” Medicine HealthCare and Philosophy 2013; 16: 888.
55
Greenberg, “The Global Organ Trade,” 238.

56

Israel, Japan, Oman, Saudi Arabia, and the USA. Though
the question of financial exploitation is beyond the scope of
this article, the question as to whether human organ sale has
the potential of being financially exploitative appears to be asettled one.
Aside from warnings of financial exploitation, theacceptability of a market in human organs must also be
gauged in terms of moral costs and benefits. Moralistic
exploitation is the concept in which purchasers and vendors
gain from a transaction, which, even if freely consented to, is57
fundamentally immoral. The idea that such a trade in humanorgans may beget moral harm is a proper concern and isneed of close inspection. If commercialization of humanorgans would promote equality and liberty more successfully
than alternative policies, then this would tip the burden of
proof against those who would forbid such a market.
Alternatively, if the market would inappropriately restrain
freedom, increase inequality, or discourage responsible
behavior, such moral concerns may outweigh potential
58
benefits. The moral harm that will be examined in thissection arrives primarily in the form of improper
commodification of the body, which leads to concerns ofhuman rights and human dignity.
A market in human organs would bring about numerous
human rights concerns. One of the primary aims of the 2005
UNESCO Universal Declaration on Bioethics and Human
Rights is “to promote respect for human dignity and protect
59
human rights” in the context of scientific advancement. For
this reason, this essay will in large part draw from the 2005
UNESCO Declaration to form its conclusions. The principles
within the Declaration were agreed upon by the member
states of the United Nations Educational, Scientific, andCultural Organization, and they are signified as being
universally applicable to all men and women regardless offactors such as race, age, religion, socio-economic standing,or geographic locale. Included in this discussion will be theprinciples of human vulnerability, consent, equality, justice,and equity, and human dignity and human rights.
Article 8 of the 2005 UNESCO Universal Declaration on
Bioethics and Human Rights asserts that when applying
scientific knowledge and medical practice to individuals, thevulnerability of men and women must be taken into account.
That is, individuals and groups of distinct vulnerability should
be protected and respected. UNESCO defined vulnerability
60
simply as the susceptibility of being wounded. While notingthat various commentators on the matter of organ sale reportthat vulnerable peoples are susceptible to this practice, thenotion of human vulnerability appears to be especiallyrelevant to this topic.
The vulnerable populations include, but are not limited to,the illiterate, impoverished, undocumented immigrants,
prisoners, and political or economic refugees. Indeed, those
populations in resource-deprived countries are a chief source

56

Yosuke Shimazono, “The state of the international organ trade: aprovisional picture based on integration of available information,”
Bulletin of the World Health Organization 2007; 85(12): 955-962.
Accessed
December
5,2014,
http://www.who.int/bulletin/volumes/85/12/06-039370/en/
57
Cherry, “Is a Market in Human Organs Necessarily Exploitative?”
339.
58
Mark J. Cherry, Kidney for Sale by Owner: Human Organs,
Transplantation, and the Market, (Washington, D.C.: Georgetown
University Press, 2005), 83.
59
Henk ten Have, Michèle Jean, The UNESCO Universal Declaration
on Bioethics and Human Rights: Background, Principles, andApplication, (Paris: UNESCO Publishing, 2009), 81.
60
ten Have and Jean, The UNESCO Universal Declaration on
Bioethics and Human Rights, 155-64.

Eubios Journal of Asian and International Bioethics 25 (March 2015)
61of organs for rich patient-tourists. The notion of humanvulnerability should not merely be applied to individuals in
underdeveloped lands. It is now widely accepted thatvulnerability is universal in scope. That is, at some point inlife, all humankind is vulnerable, regardless of social status,
62
intelligence, authority, or economic power. For many, thestate of vulnerability is transient or contextual rather thaninherent. However, it is to those individuals, groups, orcommunities for whom vulnerability is not a transient state
63that attention is particularly important. To be certain, thenotion of vulnerability is a criticism of the conventional
emphasis on individual autonomy as insufficient, and that
attention should be directed towards the conditions for64
humanity’s flourishing. What is more, the principle of respectfor human vulnerability should be linked to that of humandignity, which reinforces the notion of the unconditioned value
65
of humankind by demanding their inviolability.
Articles 6 and 7 of the UNESCO Universal Declaration on
Bioethics and Human Rights concern consent. For the scopeof this discussion, Article 7 is of specific interest for it
concerns persons without the capacity to provide an informed
consent. Indeed, this notion has been viewed as central to thediscussion over the legitimacy of selling human organs in a66
market-like system. In a market system in which organs areprocured from vulnerable populations, the fact that a seller
has agreed to sell an organ, and is not physically shackled or
threatened to do so, does not equate to making a free,uncoerced autonomous choice. That is, since the constraints
within which the option to sell a kidney are unjust, and thevictims of that injustice do not, and could not have, consented
to that injustice, their choice to sell a kidney appears to be67
only superficially autonomous. Hence, the market exchange
is not necessarily as voluntary as market enthusiasts would
suggest, for the vendor is coerced, in effect, by the68
necessities of their situation. For an impoverished individual
who is desperately trying to secure a better life for their family
and consents to selling a kidney out of desperation, agreeing
to a desperate choice does not provide the ethical protection
69
that the doctrine of consent is intended to provide. Indeed, itwould seem that the market has capitalized on individuals’
desperation. Let it be clear that this is not arguing that
impoverished people are inherently less educated and lackthe fundamental level of intelligence needed in order to makean informed decision and give informed consent, as some70
have suggested this argument states. On the contrary, levelof education does not play a central role in the logic of thisargument.
61

Bagheri and Delmonico, “Global Initiatives to Tackle Organ
Trafficking and Transplant Tourism,” 888.
62
ten Have and Jean, The UNESCO Universal Declaration on
Bioethics and Human Rights, 158.
63
S.A.M. McLean, 108. (global bioethics handbook)64
ten Have, Henk. “Vulnerability as the Antidote to Neoliberalism in
Bioethics.” Revista Redbioética 2014; 1 (9): 87-92.
65
ten Have and Jean, The UNESCO Universal Declaration on
Bioethics and Human Rights, 161-62.
66
Herjeet Marway, Sarah-Louise Johnson, and Heather Widdows.
"Commodification of Human Tissue." Chap. 104 In Handbook ofGlobal Bioethics, edited by Henk A. M. J. ten Have and Bert Gordijn,(Springer Netherlands, 2014), 581.
67
Paul M. Hughes, “Constraint, Consent, and Well-Being in Human
Kidney Sales,” Journal of Medicine and Philosophy 2009; 34: 616-21.
68
Michael J. Sandel, "What Money Can’t Buy: The Moral Limits ofMarkets." Lecture, The Tanner Lectures on Human Values,
Brasenose College, Oxford, May 11-12, 1998, 94.
69
Marway, Johnson, and Widdows, "Commodification of Human
Tissue," 591.
70
J. Radcliffe-Richards, A. S. Daar, R.D. Guttmann, R. Hoffenberg, I.
Kennedy, M. Lock, R.A. Sells, and N. Tilney, “The Case for Allowing
Kidney Sales,” The Lancet 1998; 351: 1950-52.

59

The notion of informed consent has been near the forefrontof the concerns of medical ethics since at least the
Nuremberg trials in 1945-46. The medical community, keenly
aware of the atrocities committed by physicians andresearchers under the ruthless Nazi regime, has since viewed
the protection of a person’s autonomous choice as of utmost
importance. Informed consent refers to an individual’sautonomous authorization of a medical procedure or of
involvement in research. This involves more than simple
agreement or complying with a proposed medical
intervention. Explicit authorization of a medical intervention or
research involvement through an act of informed andvoluntary consent is essential. This can occur only if thepatient or human research subject has gained substantial
understanding of the proposed action and are void of71
substantial control by others.
Thus, a convincing argument can be made that vulnerable
persons in dire situations, such as a majority of organ
vendors, experiencing blatant coercion by virtue of theircircumstances, do not have the capacity to consent voluntarily
to certain major, and in the case of selling an organ, arguably
unnecessary, medical procedures. This argument fromcoercion draws on the ideal of consent carried out under fairbackground conditions. It is not an objection to markets, only
to markets that operate against a background of inequality
72
severe enough to create coercive bargaining conditions.
On a surface level, it may seem reasonable that one should
be given the virtually unlimited freedom or autonomy to sell anorgan if one so chooses. However, in practice such a drastic
decision is rarely determined by a thoughtful, rational choice.
When faced with an option to sell an organ amidst destituteconditions and a very limited field of other options, the choicebecomes somewhat insignificant. That is, vulnerable persons
have agreed to something they would not have otherwise, if
73
conditions were considerably less pressing. Hence, theintent of the offer made to the potential organ vendor by thebroker or middleman is to elicit behavior that contradicts theindividual’s ordinary operative goals, and in that sense
attempts to use the individual as a mere means, not an end.
Indeed, those in an impoverished state should not beprompted by monetary exchange to offer the material
resources of their bodies, and to convert their own health into
a profitable commodity in the marketplace of human74
replacement parts.
Philosopher Mark Cherry does not advocate for the position
that organ markets are coercive, but rather they may beinstances of “peaceable manipulation”. He distinguishes
between the two terms by asserting that coercive actions
place or threaten to place others into a disadvantaged state
without justification, and it violates the free choice of others.
On the other hand, peaceable manipulative actions are thosethat place or offer to place others into an advantaged state towhich they have no prior entitlement. Nevertheless, the line
between what Cherry would consider to be coercive and what
he would term peaceable manipulation is difficult to draw. As
he readily admits, that which may prima facie appear as
peaceable manipulation may under closer scrutiny be shown71

Tom L. Beauchamp and James F. Childress, Principles ofBiomedical Ethics, 7th ed. (New York: Oxford University Press,2013), 120-25.
72Michael J. Sandel, "What Money Can’t Buy: The Moral Limits ofMarkets." Lecture, The Tanner Lectures on Human Values,
Brasenose College, Oxford, May 11-12, 1998, 94-95.
73
Debra Budiani-Saberi and Sean Columb, “A Human Rights
Approach to Human Trafficking for Organ Removal,” Medicine HealthCare and Philosophy 2013; 16: 900.
74
George J. Annas, “Law and the Life Sciences: Life, Liberty, and the
Pursuit of Organ Sales,” The Hastings Center Report 14, no. 1(1984): 23.

60

Eubios Journal of Asian and International Bioethics 25 (March 2015)75

to be a hidden form of coercion. Thus, games of semantics
and attempting to soften terms to make them more palatable
are of no benefit to the discussion.
Article 10 of the 2005 UNESCO Declaration affirms that theequality of all humankind in dignity and rights is to berespected. Further, all humanity is to be treated justly and76
equitably. It has been generally accepted that all humanity
be considered equal in terms of dignity, justice, rights,
77
freedoms, benefits, and opportunities.
In applying thisprinciple in the context of the question over whether or not
creating a market in human organs is morally exploitative, theconclusion that must be drawn is that all humankind,regardless of socio-economic status, equally deserve that
their human dignity, human rights, and fundamental freedoms
78
be fully respected. It is difficult to argue that the potential forharm in such a system is mitigated by financial incentives. It
seems reasonable that affixing a market price on humanorgans, even a hypothetically fair one, exploits thedesperation of the poor, turning their suffering into opportunity79
for capitalization. This would not lead to the equality, justice,and equity that is the aim of this principle.
Cherry has asserted that if one is concerned that the poor
will be induced by their poverty to sell their organs, one mustalso be concerned that removing what the poor may see as
an attractive option, itself coercively limits the liberty of thepoor autonomously to assess available opportunities to better
80
their lives, thereby engendering inequality related harms.
However, Cherry does not address the reasoning that thepoor may not be in a position, due to their specificvulnerability and desperation, to assess rightly the
implications of such a drastic decision. Further, approving ofthat which is immoral so that good may potentially come isnever sufficient justification, which appears to be very close to
Cherry’s argument.
Lastly, the concept of human dignity, its relation to thecommodification of the human body, and the argument that amarket in human organs would be moralistically exploitative
will be examined here in detail by appealing to Article 3 of the2005 UNESCO Declaration. Article 3 affirms that humandignity, human rights, and fundamental freedoms are to be81
fully respected. Further, it states that the interests andwelfare of the individual should have priority over the interest82
of science or society. Along these lines, it is often held thata market in human organs would improperly turn the humanbody into a mere commodity, a moralistic exploitation.
Undoubtedly, the debate over the commodification of the
body is rooted firmly in the necessity to safeguard the bodily
dignity and integrity of individuals. Specifically, this applies tothe need to safeguard the most vulnerable by treating themjustly and equitably. Further, though the principle of autonomy
and the concept of informed consent are fundamental in
healthcare ethics, certain conceptions fail to provide adequate
protection for individuals. The principle of justice, coupled withthe other provisions in the 2005 Declaration, requires that83
additional precautions be put into place.
Commodification turns persons, or parts of persons, intomere items to be bought and sold on an open market to thehighest bidder. Rather than taking human beings to be ends
in themselves that should be respected, a broadly Kantian
approach, persons are taken as objects to commercialize and84
given an exchange value.
Hence, markets have thetendency of crowding out morals, an idea that will be
85
examined in detail later in this article. This is why it isessential for the commodification of the human body to be an
essential topic for all nations to consider. These matters areespecially prevailing in underdeveloped nations where people
are most willing to use their bodies as a source of profit. Thus,
when analyzing the needed course of action by
underdeveloped nations, Nancy Scheper-Hughes has rightly
advised that there is an urgent demand for the developmentof new international ethical standards for human transplant
surgery due to reports of abuses against the bodies of some86of the most socially disadvantaged members of society.
Thus, the corruption of the body into mere parts to be soldappeals not to consent but to the moral importance of thegoods at stakes, the ones that are degraded by market
valuation and exchange. The argument from corruption is
intrinsic in the sense that it cannot be met by altering thebackground conditions within which market exchanges takeplace; it applies under conditions of equality and inequality
87
alike. Freedom does not consist in the voluntary exchanges
individuals make in a market economy, irrespective of theprevailing background conditions. Those who argue in favorof organ markets believe that the problems ofcommodification and privatization of public life can beaddressed merely by adjusting the background conditions
within which markets operate. According to these theorists,
there is nothing wrong with commodification that fair terms ofsocial cooperation cannot cure; if only society were organized
so that people’s choices to buy and sell items were truly
voluntary, rather than tainted by unfair bargaining conditions,the objection to commodification would fall away. What thatargument misses are the specific dimensions of life that lie
beyond consent, in the moral and civic goods that markets do
88
not honor and money cannot buy.
3) Addressing Arguments in Favor of Organ Sale
Proponents of an organ market scheme maintain thatsociety has a moral duty to save lives, reduce humansuffering, and thereby increase human flourishing when it is in
our capacity to do so. The arguments in favor of legallypermitting a regulated market in human organs often
89
approach the situation from a pragmatic viewpoint. That is,the central arguments revolve around the premise that aworldwide shortage of organs, combined with an alreadythriving underworld trafficking scene, necessitates a regulated

8375

Cherry, Kidney for Sale by Owner: Human Organs,
Transplantation, and the Market, 91-92.
76
ten Have and Jean, The UNESCO Universal Declaration on
Bioethics and Human Rights, 174-85.
77
ten Have and Jean, p. 175.
78
ten Have and Jean, pp. 180-81.
79
Nancy Schepers-Hughes, “The Global Traffic in Human Organs,”
Current Anthropology 2000; 41(2): 197.
80
Cherry, Kidney for Sale by Owner: Human Organs,
Transplantation, and the Market, 84.
81
ten Have and Jean, The UNESCO Universal Declaration on
Bioethics and Human Rights, 91-98.
82
ten Have and Jean, The UNESCO Universal Declaration on
Bioethics and Human Rights, 91.

Marway, Johnson, and Widdows, "Commodification of Human
Tissue," 581.
Marway, Johnson, and Widdows, p. 582.
85
Michael J. Sandel, What Money Can't Buy: The Moral Limits ofMarkets. 1st ed. (New York: Farrar, Straus and Giroux, 2012), 93130.
86
Nancy Scheper-Hughes, “The Global Traffic in Human Organs,”
Current Anthropology, 41, no. 2 (2000): 191
87
Michael J. Sandel, "What Money Can’t Buy: The Moral Limits ofMarkets." Lecture, The Tanner Lectures on Human Values,
Brasenose College, Oxford, May 11-12, 1998, 95.
88Michael J. Sandel, p. 122.
89
A. H. Barnett, T. Randolph Beard, and David L. Kaserman. "The
Medical Community's Opposition to Organ Markets: Ethics or
Economics?" Review of Industrial Organization 8, no. 6 (1993): 66978.
84

Eubios Journal of Asian and International Bioethics 25 (March 2015)
market in order to combat the criminal activity and boost
90
supply to ailing patients. Proponents of organ sale havemore recourse to consequentialist theories. This section will
be devoted to addressing arguments in favor of organ saleand also looking at the practice of organ sale in Iran.
Commonly, proponents of a market in human organs, inorder to form their case, utilize the argument that sellers areentitled to exercise autonomy. Vendors, as autonomous
agents, have the near unbarred freedom to make choices with
their bodies, including the option to sell an organ, such as a91
kidney. Indeed, the argument from autonomy is a common
tool for proponents of a market in organs. If the individual
chooses to sell, they personally benefit and the money they92
receive would improve their life chances.
Any conflict
between non-malfeasance and beneficence is increasingly
resolved in favor of the libertarian and consumer-oriented
principle that those able to broker or purchase a human organ
should not be prohibited from doing so. Indeed, in a market
situation with a high demand for organs and relatively low
supply, the remuneration to the vendor has the possibility of
being quite high, resulting in a win-win situation for both theorgan vendor and recipient. In this argument, oftentimes
concerns for social justice do not figure into the discussion
because bioethical standards and principles have been finely
calibrated to mesh with both the needs and wants of a93
consumer-oriented globalization.
What is more, several prominent physicians, bioethicists,and social scientists have declared that kidney sales ought tobe allowed since we cannot improve the state of theimpoverished by removing the best option that poverty has
left. The noted bioethicist Robert Veatch has recently adopted
this stance. His reasoning is that since society will continue tobe uncaring and neglectful of the wellbeing of theimpoverished, it is categorically wrong to impede the sole94
measure that would benefit them. Further, although the U.S.
does not allow commerce in organs, transplant surgeons andhospitals make handsome profits from the business of organ
trade. Even the not-for-profit transplant registries andagencies that procure the organs garner for their employees a95
middleman’s livelihood. A worthy question is why should
everyone be making money from this business bar theindividual whose organ makes the whole enterprise possible.
However, the wealth of information that has been collectedon the trade in human organs completely contradicts the oftcited claim that sale would enable the poor to climb out of themire of poverty. Lawrence Cohen, an anthropologist at UC
Berkley, along with another team of researchers from
Pennsylvania State University, conducted independentstudies of families in Madras, India who had had a member
sell a kidney. They both came to the same conclusion:individuals who sell kidneys are generally in debt prior to
selling and back in debt afterwards as well. They determinedthat a decision to sell a kidney had less to do with raising

90

T. Randolph Beard, John D. Jackson, and David L. Kaserman,"The Failure of U.S. Organ Procurement Policy," Regulation (2008):
22-30.
91
F. Moazam, R. M. Zaman and A.M. Jafarey, “Conversations withKidney Vendors in Pakistan. An Ethnographic Study,” The Hastings
Center Report 2009; 39(3): 29.
92
David J. Rothman and Sheila M. Rothman, Trust Is Not Enough:Bringing Human Rights to Medicine (New York: New York Review
Books, 2006), 26.
93
Nancy Scheper-Hughes, "The Ends of the Body: Commodity
Fetishism and the Global Traffic in Organs," SAIS Review 22, no. 1(2002): 62.
94
Rothman and Rothman, Trust Is Not Enough: Bringing Human
Rights to Medicine, 26-27.
95
Leon Kass, Life, Liberty, and the Defense of Dignity: The Challenge
for Bioethics, 177.

61

money toward a current or future goal and more to do withpaying off high interest debt to local moneylenders. Cohen
goes even further by suggesting that once a particular context
becomes known to organ brokers as a prospective source oforgans, brokers intensify their searches there andmoneylenders increase their pressure for repayment of debts.
Thus, selling an organ does not appear to further theautonomy that proponents purport; it leads to a false liberty
96
that does not actually benefit the vendors.
What is more, society properly restricts the liberty of
individuals in a number of different manners. Laws prohibiting
prostitution, limits on late-term abortion, occupational healthand safety guidelines, laws requiring seatbelt usage and thewearing of motorcycle helmets are only the tip of theproverbial iceberg. Even when we permit individuals to risk
their lives and health, society often regulates the degree of
danger. American Footballers must wear helmets and boxers
submit to blood tests for infectious diseases. These can all beviewed as governmental or organizational paternalism. The
issue is not whether the state has the power to act
paternalistically, for it obviously does, but whether it can
97
justify its actions to the satisfaction of citizens. Cherryreasons that the state’s coercion cannot be justified, for hehas argued that protecting the poor from a market in humanorgans only closes a wretched range of options still further.
He contends that added to the dreadful troubles of poverty
are the moralistic coercions of the state, removing options
that the potential vendor may see as the best that they have98
to improve their lot in life.
A second chief argument for proponents of a commercial
market for human organs is couched in the language ofsupply and demand. This is a pragmatic argument which
reasons that the scarcity of the organ market can ethically be
addressed by employing market forces. As the argument
goes, the burdens of the limited supply of human organs
demands an open market system. Deeply embedded in thisargument is a rationale based upon pure commercialism, andit holds that there is nothing inherently immoral withfashioning commodities out of the human body. Harvard
University Professor of Government Michael Sandel has
recognized that part of the appeal of markets is that they do
not pass judgment on the preferences they satisfy. Markets
do not ask whether some manners of valuing goods arehigher or worthier than others. For economists, the only valid
question between someone willing to buy a kidney and aconsenting adult willing to sell is, “How much?” Markets do
not discriminate between admirable preferences and baseones, for each party involved decides for himself or herself
99
the value to place on the things being exchanged.
Moreover, as the argument goes, by increasing the supplyof organs, the market mechanism will eventually bring theprice of organs down, allowing more people the ability to100afford their much-needed transplant. However, as George
Annas has stated, an increase in supply is not in itself
sufficient justification. If the primary issue is supply, increased
efforts to make current methods of procurement more efficient
should be exhausted prior to embarking on a radically novel

96

Rothman and Rothman, Trust Is Not Enough: Bringing Human
Rights to Medicine, 27.
97
Annas, “Law and the Life Sciences: Life, Liberty, and the Pursuit ofOrgan Sales,” 22.
98
Cherry, Kidney for Sale by Owner: Human Organs,
Transplantation, and the Market, 93.
99
Sandel, What Money Can't Buy: The Moral Limits of Markets, 14.
100
Claire Andre and Manuel Velasquez, “Kidneys for Sale,” Issues in
Ethics, 1, no. 2 (1988), accessed December 3, 2014,
http://www.scu.edu/ethics/publications/iie/v1n2/kidneys.html.

62

Eubios Journal of Asian and International Bioethics 25 (March 2015)101

and controversial course. Society can often fall into thinking
that economic efficiency—getting goods and services to thosewith the greatest willingness and ability to pay for them—
defines the common good. Indeed, textbook economic
reasoning makes such schemes difficult to resist, for if abuyer and a seller can agree on a price for an organ, the deal
102
presumably makes both parties better off. Yet, as has been
discussed, this is often a mistaken notion.
Further, it has been argued above that society does nothave the duty to preserve life at any cost, including moral, andby whatever means necessary. It would seem that a society
should not adopt practices that would create injustices orviolate the rights of individuals. Because governments havethe mandate to protect its citizens, allowing such an organ
market schema does not lead to this protection. In order tofurther illustrate this, it is necessary to analyze a context inwhich organ markets are legal.
In this business of organ trade, it is not a Western nationthat is the leader of the free-market world. Iran has the
curious distinction of currently being the only country to
regulate a market in human organs. Some have argued thatcertain ethical principles can be modified so that what isforbidden in one context may be permitted in another. If thispremise holds true, then the market-style schema of Iran has
the prospect of being morally praiseworthy. Indeed, whenapproaching the issue of exploitation in regards to organ
donation, the recurring rhetoric is that it would perhaps be
desirable to create an official system that would control andsupervise transplants and see to the interests of the organ
vendor. However, from the collected data available on such amechanism in Iran, it would seem that it has been applied in a
103
far from perfect manner.
While Iran has garnered more kidneys for renal transplants
since implementing their controlled system of financial
104
remuneration, major issues continue to plague it. Financial
incentives have been found to be the driving force in the
majority of those who decide to be a non-directed donor, notaltruism. A mere two years following their donation, 75% ofdonors were dissatisfied with their decision. What is more, themajority of those who donated were, at time of donation, living
below the Iranian poverty line and 56% used their105
compensation to repay debts.
Though the removal of the middleman in Iran prevents overt
commercialism, this system still does not appear to mitigate
106
other exploitative factors.
To begin, as has been widely
accepted, payment for organs is ethically objectionable as it
commodifies that which should not be commodified—thehuman body. Even if one does not accept theabovementioned position that bodily commodification ismorally reprehensible, the fact that vulnerable populations arebeing preyed upon by wealthier individuals is incontrovertible
exploitation. In Iran’s system, the financial transaction ismade between recipient and vendor without a middleman, per
se. Thus, the recipient must have the financial means to beable to afford the paid transplant. The fact that the majority of101

Annas, “Law and the Life Sciences: Life, Liberty, and the Pursuit ofOrgan Sales,” 22.
102
Michael J. Sandel, "If I Ruled the World: Michael Sandel." Prospect,
October
2012,
accessed
December
5,2014,
http://www.prospectmagazine.co.uk/regulars/if-i-ruled-the-worldmichael-sandel.
103
Ofra Greenberg, “The Global Organ Trade”. Cambridge Quarterlyof Healthcare Ethics 2013; 22: 244.
104
Rizvi, A. H., A. S. Naqvi, N. M. Zafar, and E. Ahmed. "RegulatedCompensated Donation in Pakistan and Iran." Curr Opin Organ
Transplant 14, no. 2 (Apr 2009): 126.
105
Rizvi, Naqvi, Zafar, and Ahmed. "Regulated CompensatedDonation in Pakistan and Iran," 126.
106
Rizvi, Naqvi, Zafar, and Ahmed. pp. 126-27.

Iran’s vendors elected to sell an organ while living below thepoverty line in order to repay outstanding debts, forces one toquestion the rationality of the act. It appears that even in
Iran’s system, vulnerable persons have agreed to something
they would not have otherwise, if conditions were lesspressing. Hence, there is little reason to believe that untainted
selflessness and altruism are the driving forces behind any
107such donation system.
To summarize, while Iran has attempted to regulate amarket in human organs, it has been far from perfect. The
literature attests that the majority of persons who sell anorgan are impoverished and do so for financial reasons. Whatis more, after a period of time these vendors come to regret
their decision. Thus, quality of life is not increased. This points
to the idea that economics is not a free-standing, valueneutral science. Standard economic models assume thatmarkets are inert, that they do not touch or taint the goods
they exchange. Yet, if the buying and selling of particular
goods alters their meaning, then the case for markets cannot
solely rest on considerations of efficiency. It must also rest on
a moral argument about how to value the goods in108
question.
4) Markets Crowd out Morals
While this article has addressed the relationship between
markets in human organs and exploitation, further
considerations must be explored. Michael Sandel has
maintained that markets can have the tendency of crowdingout morals. Buying a kidney does not dissolve the good of thekidney, for it will work regardless of monetary exchange.
Arguably, though the good may not be spoiled by monetary
exchange, the good is arguably degraded, corrupted, or109
diminished as a result of the selling. Determining whether
human organs should or should not be sold requires having amoral conversation, such as the one presented in this essay.
Standard economic reasoning holds that commodifying agood does not alter its character. In this reasoning, market
exchanges increase economic efficiency without intrinsicallyaltering the goods that are exchanged. Using financial
incentives to ease the gap between supply and demand forkidneys is merely making use of the market for a specificpurpose. Thus, the use of market exchanges is mutuallyadvantageous because it makes both parties better off
without causing anyone else to be in a worse state. However,this reasoning only works if one assumes that market
relations and the attitudes they foster do not diminish thevalue of the goods being exchanged, and this assumption is
open to doubt. As markets reach into the spheres of life andculture that are traditionally governed by nonmarket norms,
the notion that markets do not touch, corrupt, or in any way
degrade the goods they exchange becomes increasingly
implausible. Yet, financial incentives can backfire by crowding
110
out nonmarket norms. Thus, though Iran may garner moreorgans with their payment system, this does not mean thatoffering payment for a certain behavior will always procure
more kidneys.
Fred Hirsch, a British economist, has argued thatconventional, mainstream economics has overlooked what hehas termed the “commercialization effect”. This is the effecton the characteristics or makeup of a good or activity when it
is supplied exclusively or predominantly on commercial terms
rather than on some other basis, such as mutual obligation,
altruism, love, or feelings of service. Numerous studies have
107

Rizvi, Naqvi, Zafar, and Ahmed. p. 127.
Sandel, “If I ruled the world: Michael Sandel,” Prospect, October
2012.
109
Sandel, What Money Can’t Buy, pp. 95-96.
110
Sandel, What Money Can’t Buy, pp. 113-14.
108

Eubios Journal of Asian and International Bioethics 25 (March 2015)

63

given support for Hirsch’s insight. When people are involvedin an activity that they consider to be intrinsically worthwhile,offering them financial incentives may weaken their motivation111
by reducing or crowding out their intrinsic interest. This may
also affect the solidarity of the individuals in the population.
Perhaps the most well known illustration of thecommercialization effect is that done on blood donation andsale by the British sociologist Richard Titmuss. Titmuss’ 1970
book, The Gift Relationship, examines this phenomenon bycomparing the system of blood collection in the United
Kingdom and that in the United States. In the U.K., unpaid,
voluntary donors give all blood for transfusion. In the U.S. at
the time of the study, some blood was bought by commercial
blood banks from individuals, typically impoverished, as ameans of making money. After presenting a wealth of data
showing that in both economic and practical terms the British
system works better, Titmuss argued in favor of the U.K.
system and against treating blood as a commodity to bebought and sold on the free market. In the face of the
supposed efficiency of markets, Titmuss concluded that theAmerican system led to chronic shortages, wasted blood,
112
greater costs, and an increased risk of contaminated blood.
Further, Titmuss provided an ethical argument against thecommodification of blood that offers an illustration of thefairness and corruption objections to markets. Part of Titmuss’argument was that a market in blood exploits the situation of
the poor, which constitutes the fairness argument. Titmuss
backed up his claim with data supporting his belief that thecommercialization of blood leads to more blood being
supplied by the poor, unskilled, and unemployed. Thus, inTitmuss’ estimation, there was a redistribution of blood from113
the poor to the rich. Titmuss’ second objection was thatturning blood into a mere market commodity erodes the senseof obligation to donate and diminishes altruism, which is thecorruption argument. Thus, once people begin to view blood
as a routinely bought and sold commodity, they are less likely
to feel a moral responsibility to donate it. The practice ofbuying and selling blood demoralizes the practice of free
donation, thus leading to the crowding-out effect of market
relations on nonmarket norms. Titmuss even worried thatmarket-driven societies could become so inhospitable toaltruism that they could be said to impair the freedom of
persons to give. Thus, the crowding-out effect could have theability of eroding the sense of community within a given
114
population.
While an argument from analogy, taken from Titmuss’findings on the blood supply and applied to markets inorgans, cannot be empirical, it may infer similarities and offer
caution to those desiring a market in organs. The baser
conclusion that is to be drawn from this subsection is that thecommercialization effect as detailed by Hirsch and Titmuss
may decrease the altruistic donation of organs, as individuals
perceive they are merely another commodity to becommercialized and pilfered for the sake of profit. Yet, as
Sandel has observed, the characteristics of altruism,
solidarity, and generosity are similar to muscles that develop
and grow stronger with exercise. One defect of the marketdriven society is that it lets these virtues languish. Therefore,
Sandel’s encouragement is that in order to renew our public
life, society needs to exercise these characteristics more
115
strenuously.
5) Conclusion

This essay has examined the relationship between the saleof human organs and, primarily, moralistic exploitation.
Concerns over human rights and human dignity were at theforefront of this discussion. Further, the two chief arguments
in defense of organ sale were examined, as was the current
government-sanctioned market in Iran. As the literaturedemonstrates in Iran, regulated markets have been shown not
to benefit the vendor financially in the long run. The
concluding section offered further considerations on theunintended effects of markets in human organs and drewfrom Sandel’s argument that markets can have the tendencyof crowding out morals.
It remains to be seen whether nations aside from Iran will
go forward into this brave new world of organ markets. The
debate of organ sales could provide an opportunity to educate
the public about organ donation and procurement, and open
the broader discussion of social justice and equity in income
116
distribution and access to healthcare.
Perhaps moreworrisome to our society is not the commodification of ourbody parts, but rather the coarsening of our sensibilities andattitudes, and the perhaps irreversible effects this may haveon the way we come to conceive of ourselves. Many in oursociety are enthusiastic to expend enormous energy and vast
sums of money to preserve and prolong bodily life, but in theprocess our embodied life is stripped of its gravity and muchof its dignity. As Leon Kass has defined it, this is, in a word,
117
progress as tragedy.

111

116

Sandel, What Money Can’t Buy, p. 120-22.
Sandel, What Money Can’t Buy, pp. 122-23.
113
Sandel, What Money Can’t Buy, p.123.
114
Sandel, What Money Can’t Buy, pp. 123-25.
115
Sandel, What Money Can’t Buy, p. 130.
112

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The St. Paul University Quezon City, Asian
118
Bioethics Association (ABA) , Eubios Ethics Instituteand American University of Sovereign Nations(AUSN), invite you to submit an abstract for
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