Eubios Journal of Asian andInternational Bioethics
EJAIB Vol 15 (5) September 2005 ISSN 1173-2571
Copyright ©2005 Eubios Ethics Institute (All rights reserved, for commercial reproductions).
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Official Journal of the Asian Bioethics Association (ABA)

Contents

page

Editorial: Social responsibility and bioethics
137
Ethics Review of Externally-Sponsored Research in Japan 138- Alireza Bagheri & Darryl Macer
Bioethics in Africa: The new human genetics and a casefor responsible global governance141- Merry Osemwegie
Emergency Management in Public Health Ethics: Triage,
Epidemics, Biomedical Terror and Warfare161- Hans-Martin Sass
ABA Membership, IAB Genetics Network, Conference
167
Ordering Information
168
Send papers to the editor in electronic form if possible.
Papers are peer reviewed. More details on the penultimate
page, as well as the editorial board and aims of EJAIB. The
editor, Darryl Macer is Director, Eubios Ethics Institute; and an
Affiliated Professor, United Nations University Institute ofAdvanced Studies, Japan.
Editorial address: Prof. Darryl Macer
RUSHSAP, UNESCO Bangkok,
920 Sukhumvit Rd, Prakanong,
Bangkok 10110, THAILAND
Fax: Int+66-2-664-3772
Email: d.macer@unescobkk.org

The November 2005 issue is being published at thesame time.
Please note the new edition of the textbook can beordered and is available. Teachers who wish to try
the text can obtain copies for free. Please write to theeditor. It has double the number of chapters andtopics as the first edition, which it replaces, Bioethics
for Informed Citizens Across Cultures.

A Cross Cultural Introduction to Bioethics
Editor, Darryl Macer,
302 pages, A4 size.

Editorial: Social responsibility
and bioethics- Darryl Macer, Ph.D.
UNESCO Bangkok
This issue of the journal comes after the successful
First UNESCO Bangkok Bioethics Roundtable, held 11-15
September, in Bangkok
There were nearly 100 papers
presented in plenary sessions with active discussion among
150 registrants from 32 countries. The abstracts were
published in the July issue of EJAIB, and the proceedings
including transcripts of the discussions are being prepared to
publication early in 2006. The volume will be immense, andwill help widen concepts of the research methods and policy
actions that can be taken to implement bioethics to the needsof people across the world.
As we develop bioethics in the Asia-Pacific region there
is a need for exploring the cultural situation of each country,
and conducting in depth analysis of the situation that exists. In
this issue of the journal there is a paper by Osemwegie thattook one of the methods of descriptive bioethics that havebeen utilized in Asia and the Pacific by Eubios Ethics Institutein the past decade and applied these to an African context.
Whether we use the term opnion poll, survey, interview, etc.,
the general principle is to seek the views of the population. A
mixture of methods is required. The results are interesting inthat similar to the surveys conducted in China, Thailand andIndia in the 1990s, the respondents are enthusiastic towards
the adoption of genetic technology. There is a need for policy
makers to consider the implications of that enthusiasm, and to
set up methods for community engagement and public
discussion with an aim as to how to implement theinternational bioethics declarations agreed to by governments
at UNESCO General Conferences in 1997, 2003 and 2005.
The other two papers in this issue also look at issues ofneeds to countries in the region. The question of externallysponsored research in Japan was surveyed by Bagheri andMacer, and the results show the application of ethicalprinciples to questions of sponsored research. The way that
this issue is covered in other countries would be of muchinterest. The ethics of emergencies is discussed by Hans
Martin Sass. In 2006 UNESCO will have some meetings onbioethics and social responsibility, including looking at the
responses in recent disasters such as the Tsunami in South
East Asia and the earthquake in Pakistan/India.

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Eubios Journal of Asian and International Bioethics 15 (September 2005)

Ethics Review of ExternallySponsored Research inJapan- Alireza Bagheri, M.D., Ph.D.
Graduate School of Law, Kyoto University, Japan
Sakyo-ku, Yoshida, 606-8501, Kyoto, JAPAN
Email: bagheria@yahoo.com- Darryl Macer, Ph.D.
RUSHSAP, UNESCO Bangkok, 920 Sukhumvit Rd,
Prakanong, Bangkok 10110, THAILAND
Email: d.macer@unescobkk.org
Abstract
This survey has been designed as a multinational
collaboration to collect data from several countries focusing on
developing countries. The main purpose was to elaborate thefunctions of ethics committees regarding externally-sponsoredresearch (ESR). In March 2004 a total of 89 open-ended
questionnaires were sent to ethics review committees (ECs) in
medical schools, medical research institutes and hospitals
affiliated to the public and private medical universities inJapan.
Twenty two ECs replied (25%), and among them five ECs
had reviewed eleven ESR proposals in 2002-3. Five of those
ESR proposals have been approved and four proposals havebeen approved after some revisions. Two proposals weredeferred but not resumed. In their review, respondents weremore concerned about “individual consent” than “community
consent”. Post-trial access to effective interventions was not areal concern. As for “Standard of care”, seven ECs replied thatthey review the ESR proposal based on the international
standards and four based on the local standards. Whether
ESR proposal is matched with the national health priorities
was not a great concern. Respondents expressed theirconcern about socio-cultural issues.
Ethics in research especially dealing with externallysponsored research is a relatively new subject and underdevelopment in Japan. Although Japan is not a developing
country, in order to protect individual human subjects and local
community, capacity building in ethics review especially inresearch collaboration with other developed and developing
countries is crucial and it has to be included in ethics inresearch programs through out the country.
BackgroundIn developing and developed countries alike, biomedical
research is an essential component of improving healthcare.
An emerging issue is that many developing countries havebeen targeted as host countries for clinical trials on humansubjects which might not be conducted in developed countries
because of various factors such as: the cost of research,accessibility of human subjects, lack of compensation policy,
ease to get acceptance from local ethics committees in hostcountries, particular population attributes, e.g. genetic and/or
ethnic factors. Obviously in any collaboration the fear of
exploitation will undermine a constructive effort particularly inless powerful developing countries.
Several international ethical guidelines have been issued bysome international organizations to address the issue of
externally-sponsored research particularly in developing
countries [1]. In practice on the one hand applying theseguidelines is often fraught with difficulty and some times
provide conflicting advice [2]. On the other hand the current

situation in different countries in terms of how they deal with
ESR proposals has not been documented.
In 2004 a survey has been designed by authors and someother colleagues in different countries, as a multinational
collaboration to collect data from several countries (focusing
on developing countries). The aim was to elaborate thefunctions of ethics committees regarding externally-sponsoredresearch (ESR). In Japan the so-called "Millennium Project", agenome-wide association study on five common diseases(dementia, cancer, diabetes mellitus, hypertension, andasthma), lunched by the Japanese government in December,1999 was a reminder to the necessity of ethics committees inJapan. Earlier reports had found a gradual development of
ethics committees in Japan. Since there have been no official
guidelines to deal with ethical issues in genetic researches,
the Japanese Ministry of Health, Labor and Welfare (MHLW)
appointed a special committee to develop ethical guidelines[3]. Accordingly in March 2001, "Ethics Guidelines for Human
Genome/Gene Analysis Research" was issued jointly by three
Ministries (the Ministry of Education, Sports, Science andTechnology (MEXT), the MHLW, and the Ministry of Economy,
Trade and Industry (METI)). In June 2002, "Ethics Guidelines
for Epidemiological Studies" has been developed by MEXT
and MHLW. According to these ethics guidelines, every
research institute and hospital which intended to conduct
genomic research involving human subjects is required toestablish an ethics review committee. When these ethics
guidelines were issued, it was implicitly premised on thecondition that research institutes and hospitals had set up theirown ethics review committees and these committees could
fulfill their rolls properly. A nationwide survey by Shirai andcolleagues showed that among the research institutions inJapan, 32% set up one ethics committee, 15% had two or
more ethics committees with different roles, and 7% werepreparing to set up an ethics committee. However, 47% of theresearch institutions had not established any ethics
committees [4].
This paper highlights how surveyed ethics review
committees deal with externally-sponsored research. By doing
so the paper presents the recent statistics of ESR proposals inJapan.
Methods
The questionnaire was designed to evaluate the ethics
review committees in three dimensions: first, the status of
those ethics committees, second the function of ethics
committees to review externally-sponsored research, third thecurrent statistics of externally-sponsored research in Japan.
The issues such as: the composition and function of ethics
committees, the number of research proposals, suggested byan international organization, foreign research institutes orindividual researches, and the points which ECs take into
account in reviewing ESR proposals and other relevant issues.
A total of 89 open-ended questionnaires were sent to ethics
committees by mail. The target institutions in this survey were
medical schools, medical research institutes and hospitals
affiliated to the public and private medical universities who
have already established ethics committee [5]. The survey was
carried out between March and April, 2004. Twenty two ECs
have been replied (a response rate of 25%) which include
seventeen ECs in public and five private universities. Five ECs
have been reviewed eleven externally-sponsored research
proposals. As for the status of Japanese ethics committees ingeneral, authors also refers to some other published data.

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Eubios Journal of Asian and International Bioethics 15 (September 2005)
Table 1: Degree of concern while reviewing an Eternally-Sponsored Research Protocols
The Points taken into Account by ECs in Reviewing
ESR Proposals (The Degree of Concern)
Whether research topic is one of the health prioritiesof the country
Scientifically sound and reliable researchmethodology
Respecting social and cultural issues
Compensation to the subjects
Post-trial access to effective interventions
Observance of justice in subject selection

AlwaysSometimes

Seldom

Never

1

0

5

4

No
answer
12

11

0

0

0

11

10
2
2
10

1
2
4
1

0
3
2
0

0
3
3
0

11
12
11
11

Table 2: Ethics Review Based on Local and International Standards
Decision in accordance withStandard of Care
Minimizing the risks

Local Standards
4
6

Both
1
1

International Standards
6
4

Table 3: Number of Externally-Sponsored Research (ESR) reviewed by the committee in 2002 and 2003, and results
ESR Proposal
Approved
Approved with conditions and changes
RejectedDeferred but not resubmitted

2003
5
4
0
2

Table 4: Kinds of Collaborations
Collaboration

Multinational

Bilateral

Kind of Collaboration
Samplecollection

Approved
ESR proposals

1

8

5

data
analyzedin Japan
7

Results
Status and the Function of ECs in Reviewing ExternallySponsored Research
In all ECs membership is for two years each term. There isa payment system for external experts who are invited for ameeting. Only two ECs in private universities have included
religious experts and twelve ECs who replied had lay persons
in their membership. Participation of female representatives
has been emphasized by three ethics committees. No
previous experience is required but the committees provide
material for self-training. Half of the respondents are always
concerned whether the research methodology is scientificallysound and reliable. Among respondents, five ECs have had all
members trained for their job while in three ECs none of themembers were specially trained. Another six ECs have sometrained members for their job.
“Individual consent” is an issue which nine ECs take into
account while reviewing an ESR proposal and four ECs showsconcern about “community consent” and eight ECs areconcerned whether informed consent is always documented inwriting. Six ECs responded that they are also concerned
whether any effort is made to ascertain that the subjects
actually comprehend the research process. In theirassessment of the risks to the subjects and benefits to others(society) five ECs gave priority to “avoiding harm to thesubjects” while two ECs gave priority to the benefits of society.
As seen in Table 1, only one EC replied that in their ethicalreview they are “always” concerned whether the suggested
proposal is matched with the national health priority, while fiveECs are “sometimes” concerned; four ECs said they were

data

1

analyzedabroadwith capacity
building
0“never” concerned about this issue in their ethical review.
Regarding cultural issues, of eleven respondents, ten ECs
replied that in their ethical review they “always” take into
account cultural and societal beliefs and one EC chose“Sometimes”.
As it is shown in Table 2, regarding “Standard of care”
seven ECs, review the proposal based on the international
standards (best available care in the world), and four ECs
review ESR proposals based on the local standards (bestavailable care in the country). Decision about the minimizing
the risks, four ECs replied they decide based on international
standards and six ECs decide based on the local standards(Table 2). Asking about the necessity of compensation to thesubject, among ten ECs who replied, three ECs chose:“Seldom”, two ECs: “sometimes”, two ECs “always” and threesaid they “never” take it into account in their review. Regarding
the necessity of post-trial access to effective interventions (theavailability of the research products to the local community),
two ECs said they “always” considered it an important issue intheir review, four ECs replied “sometimes”, two ECs “seldom”
and three of them “never” consider post trial access as a
responsibility of the researcher or research institute. Whether it
is necessary to be concern about “justice in subject selection”
in the ESR proposal, ten ECs replied they have emphasizedon it and one EC said they are “sometimes” concern about thisissue.

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Eubios Journal of Asian and International Bioethics 15 (September 2005)

Current Statistics of Externally-Sponsored Research
As shown in Table 3, five ECs have been reviewed eleven
ESR proposals in 2002-3. Five of those ESR proposals havebeen approved and four proposals have been approved aftersome revisions. Two proposals deferred but not resumed.
The reasons for asking to revise the study protocols
include; incomplete documentation, concern about sociocultural issues, legal issues and concern about placebo
controls. Approval from the national ethics committee is not anecessary requirement for ESR proposals to be conducted inJapan and the local ethics committee can make a decisionindependently. Asking who is responsible to review whether
ESR proposal is conforms with scientific principles half of them
replied that ECs should decide and no need to send the
proposal to the scientific committee.
As shown in Table 4, out of nine approved ESR projects,
eight proposals were as bilateral collaborations, and one as amultinational collaboration. In five cases the role of Japanesecollaborators simply was to collect the samples. There was
one multinational project which data were analyzed in country
in origin. In 7 cases the data have been analyzed in Japan.
Their answers to the question about the character offunding agencies were not clear. The host collaborator in 5
cases were researchers and in other cases Japanese
Universities were as collaborators.
Discussion
The research approval responsibility lies with theresearchers as well as the ethics committee, no matter, if astudy protocol is submitted by a local institute or suggested
from a foreign collaborator.
Lessons from the experience of AZT trials in Africa andAsia in 1990s [6] warned health policy makers to take enoughmeasures to ensure post trial access for the local community.
Although there is a general consensus that participants should
benefit from taking part in research.[7]. Who should supply
post-trial treatment, and how? This issue has caused
controversies in the area of ethics in research. In a note ofclarification on paragraph 30 of the declaration of Helsinki(2000), the World Medical Association (WMA) gives the
responsibility to ethics review committee to ensure that posttrial access is described to the study protocol [8].
It has been stressed by international guidelines that
researchers should endeavor to secure post-trial access toeffective interventions for all the participants in a trial who
could benefit [9]. This issue did not get enough attention of the
ethics committees in Japan, as only two ECs out of eleven,expressed their strong concern. Whether it is because Japanis an industrial country and such issue does not make themworry is open to question.
How ethics committee approach the issue of risk/benefit
assessment is critical. If the ethics committees give moreweight to “more benefits” in their risk/benefit assessment, andtake “more benefits” as the standard of their assessment, thenexposure of the subjects to a high-risk situation under thepretext of more benefits for the society and even for the
subjects themselves could be argued. This condition may gainsignificance especially in such research as vaccine trials indeveloping countries. However, if the committees gives moreweight to the degree of risks inflicted on the subjects in thisassessment, that is, if they take the amount of “risks inflictedon the subjects” as their standard, then they will do their best
to protect the subjects against impending risks and search forstrategies to lessen the degree of risks or even search foralternative methods [10].

This survey shows that Japanese ECs gave more priority to“avoiding harm to the subjects” rather than benefits to thesociety in their risk/benefit assessment.
Research in developing countries was a flash point behindthe fifth revision of Helsinki because the declaration retains therequirement that new treatments should be tested against the“best current” treatment [11]. It worthwhile to mention the
Nuffield Council on Bioethics position in this regard “wherever
appropriate, participants in the control group should be offereda “universal standard of care” for the disease being studied”.
In our survey, international standard has been given more
attention than local standards as the “standard of care” byJapanese ECs.
Conclusion
Ethics in research especially dealing with externallysponsored research is relatively a new subject and underdeveloping in Japan. Although Japan is not a developing
country, in order to protect individual human subjects and local
community still capacity building in ethics review especially inresearch collaboration with other developed and developing
countries is crucial and it has to be included in ethics inresearch program through out the country.
On the other hand, if Japanese researchers want to carryout research in less powerful nations, ethically sound researchrequires them to be familiar with ethical issues arise in ESR
project in host country and to be aware of socio-cultural
sensitivities in host country.
Acknowledgements
We would like to thank Prof. Ruth Macklin, Prof. Bagher
Larijani, Prof. Leonardo de Castro and Dr. Aamir Jafarey for
their useful comments on earlier drafts of the questionnaire,and Dr. Makina Kato for the Japanese translation. The
questionnaire form can be obtained from the authors.
References
1. The Council for International Organizations of Medical Sciences(CIOMS) in collaboration with the World Health Organization(WHO): International Ethical Guidelines for Biomedical Research
Involving Human Subjects, as last revised in Sep 2002;
2. Nuffield Council on Bioethics, 2005, A Follow up Discussion Paper:
The ethics of research related to healthcare in developing
countries, pp; 37-8.
3. Kakizoe T., Ethical issues in relation to genetic analysis research,
Nippon Rinsho. 2001 Jan;59(1):185-7.
4. Shirai Y., 2003. The Status of Ethics Committees in Japan, EJAIB
13, pp;130-134.
5. "Igakukei-Daigaku Rinri-Iinkai Renrakukaigi Meibo" (The Liaison
Conference of Ethics Committees in Medical Schools in Japan)
29th, Medical Ethics Conference.
6. Macklin, Ruth. 2001. After Helsinki: Unresolved Issues inInternational Research. Kennedy Institute Ethics Journal, Vol.11
No.1, 17-36.World Medical Association,
7. Declaration of Helsinki, 2000, Paragraph 30.
The Council for International Organizations of Medical Sciences(CIOMS ) 2002, Guidelines 10.
8. World Medical Association 2004, Note of Clarification on paragraph30.
9. Nuffield Council on Bioethics: The ethics of research related tohealthcare in developing countries, April 2002 available at:
http://www.nuffieldbioethics.org/
10. Bagheri A., 2001. “Ethical Codes in Medical Research and theRole of Ethics Committees in the Protection of Human Subjects”,
Eubios Journal of Asian and International Bioethics 11 (2001), 810.
11- See reference No.2

Eubios Journal of Asian and International Bioethics 15 (September 2005)

Bioethics in Africa: The newhuman genetics and a casefor responsible global
governance- Merry Osemwegie, Ph.D.
128 Woodbrook Rd, London England SE2 0PA
Email: Merry.Osemwegie@btinternet.com
Introduction
The on-going developments in human genetics highlight anumber of realistic possibilities such as the ability not only toidentify and to treat many 1ch the basis of public opinion that
we are able to gauge public receptivity towards thepossibilities raised by the new human genetics (Brown 2003b).
Methods and sample
To gauge attitudes of university students towards libertarianeugenics in developed and developing countries, twoquestionnaire surveys were conducted. One survey was
carried out at the University of Benin (Nigeria) and the other at
the University of Manchester (England). The questions wereframed to look at how the respondents would receive thepossibilities raised by the new genetics given that the means
and techniques were safe and available. The questions were
thoroughly thought through and were designed specificallyrather than adopted. The temptation to simply use questions
that have been used in previous surveys was highly resisted toensure that the issues in the questions were tailored to thespecific context (Reiss & Straughan 1996).
The survey questionnaire explores general knowledge about
genetic engineering and trends of libertarian eugenics, forexample, sex selection, termination of embryos on the basis of
disability, health and non-health related enhancement, cloning
and regulation (see tables). There were 39 questions in total,
which the respondents were asked to answer using pre-set
options: ‘yes, more likely to agree, less likely to agree, no,undecided’. The questionnaire contained a brief explanatory
note. Each question allowed for ‘any other comment’ andthere was a separate provision for ‘general comments’ at theend of the questionnaire. Some questions were preceded bycase-scenarios (see Q9).
There were, where necessary,
some brief explanations of some of the terminology as applied
to the context in which specific questions were asked. For
practical reasons, the questionnaire was piloted in the UK
only. Samples were drawn from a cross section of both
postgraduate and undergraduate students from different
academic disciplines to reflect diverse views of, for example,
law, economics and political science, although it was not
specifically ‘discipline-led’.
In Nigeria, 710 students were asked to complete thequestionnaire compared with 390 students in Manchester.
The questionnaires were generally distributed and collected
within 40 minutes with the cooperation of the university
lecturers and fellow students. The survey sample, as withother attitude surveys, cannot represent per se the opinion of
the entire population of African and British university students.
Yet the student sample and the findings, it could be argued,
represent the opinion of a sizeable academic group. The agegroup was unrestricted but categorised (see question 1)
Useful observations on the nature of the survey
Undoubtedly, a survey of this kind is subject to bias andpreconceived ideas that may shape the analysis because of

141

limited choice (Macer et al 1995), especially when provisions
are not made for comments and/or ‘other choice’. There isanother problematic issue.
This relates to ‘on the spot
completion’ of questionnaires: perhaps given more time, therespondents would have thought and reflected on the choices
to be made and perhaps would have changed their minds.
This is because opinions and choices may change over timeand abstract choices may be easier than in practice (Wert
2000; Straughan 1989). It is worth noting, however, that the
respondents were asked to try to be as honest as possible intheir choice of answers.
Meanwhile, many of these
difficulties may have been avoided by the simple and concise
ways in which the questions were phrased just as somedetailed breakdown of specific issues was provided which, inturn generated specific responses (Macer 1995). The data, it
is hoped, would provide some significant pointers particularly
regarding how the developments and policies in the North may
affect others in distant territories in the South and how theseinterconnected issues may be embedded in a global context.
There is the problem commonly associated with social
research. That is, of selecting and prioritising what areas toanalyse because of so many connected social issues that may
invite correlations.
There is what may be seen as a biased
analysis in terms of what is deemed to be worthy of notice.
The biased analysis can be seen when the focus is on those
who said yes rather those who said no. It must be reiterated
that one of the aims of the survey is to assess how the
respondents would receive the new eugenics and whether anincreased eugenic tendency justifies the need for regulation;
thus the emphasis may be biased towards how many
respondents said ‘Yes’ to the idea of creating genetic copies ofthemselves (15% and 2%) as against the de-emphasis on the
88% and 60% who said ‘No’ (Q25a – table 4.3).
I have deliberately avoided the temptation to correlate myfindings unnecessarily and to compare my findings withprevious surveys because the questions were not exactly
identical.
Other survey findings, however, are referred towhen they become unavoidably necessary.
Hypothetically,
the questions were asked on the basis of an assumption thatthe gene-techniques were safe and available to use by
respondents at the crucial time of prenatal testing and at theinitial stages of embryo development.
A number ofdeductions could be made on the basis of the extra comments
and suggestions made by respondents.
However, as theresearch is, in the main, quantitative rather than qualitative,the deductions and additional comments made by respondents
do not form major parts of the analysis and some comments
are made available in the appendix.
As noted above, there is every temptation to engage inendless analyses in the two comparative surveys. It is worth
noting that the principle aim of the survey was neither to lookat attitudes of women towards sex selection nor how gendershapes the idea of cloning or how the age of the respondents
would affect their choices or how these attitudes correlate withother issues raised in the survey. This is not to suggest thatthese correlations are to be ignored because they may help toshed broader light on many issues. For example, if it were thecase that the respondents under the age of 19 revealed amarked preference for sex selection (Q9), then these
preferences would raise issues of a different kind. I looked
however at, for example, the correlations between gender andthe decision to increase the IQ of our children or to engage intermination of defective embryos.
Here, there was no
significant pattern by gender.
It was considered pointless to simply ‘explain what is
obvious’ from the tables as this would amount to repetition of
the obvious facts even though it is recognised that obvious
facts are what survey data are meant to convey. It is useful142

Eubios Journal of Asian and International Bioethics 15 (September 2005)

to shed light on the factors that may have influenced
respondents’ attitudes, for example, whether or not cultural
tradition or religion (e.g. being evangelical) would have somebearing on whether to accept or delete a gene responsible forhomosexuality (see Q15 & 16).
Thus, in a comparative
survey like this, it becomes inevitable and important to explain
any remarkable differences in the answers provided by the
respondents in Africa and Manchester and the reason/s why
this is the case.
The main focus, however, in terms of
relevance to this thesis is the ultimate answer yes or no etc
while the factors that influence the choices made remain
secondary. Further surveys are needed to provide detailed
analysis of how these factors underpin attitudes towards
eugenics.
Empirical evidence and useful observations
There are significant similarities and significant differencesin the attitudes of respondents from Manchester and Africa.
Where there are similarities, e.g. on regulation, thesesimilarities, on one level, would support the call for a common
approach to redress any potential misgivings by way of a
global bioethics framework. From another level, significant
differences in terms of negative attitudes towards disability
would support the need for a global bioethics framework if, forexample, the potentially defective newborn in Africa appears tohave less chance of survival or of being born at all due to lesstolerance towards human diversity amidst the absence of
current policies to address these potential misgivings on local
or regional level.
Awareness of new human genetics
There appears to be a similarly low level of awareness ofhuman genetics, genetic
engineeringand genetic
discrimination in insurance and employment. However, 18%of the respondents in Africa have never heard of genetic
engineering as against 0% in Manchester (Q6 – table 1.2).
The data also show that 37% were very much aware ofgenetic discrimination in employment and insurance in Africa
as against 15% in Manchester even though there is noevidence to suggest wide practices in the former (Q24b – table
4.1).
Secondary school students in Africa, however,according to Hayes (2004), rely on popular mass media, forexample, newspapers and television (where these areavailable) for their information about developments inbiotechnology. Whilst this could easily be assumed in relation
to university students, the use of university reference libraryand electronic technology may well account for the awareness.
It would be an understatement to say that media coverage
help to shape policies and public attitudes towards the new
genetics in the West (Nelkin 2000).
Attitudes towards genetic deformities and otherness
A significant proportion of the respondents support theneed to design our children to correct genetic deformities (e.g.
sickle cell anaemia and cystic fibrosis) 43% in Manchester and
65% in Africa, and yet 11% and 13% would decline to correctthese deformities (Q11a – table 1.8). The same attitudes arereflected in the marked differences in the attitudes towards
others who are different. Negative attitudes towards sexual
orientation were clearly visible among respondents in Africawith 59% ready to delete a gay gene if the gene would maketheir babies become homosexuals as against 12% in
Manchester.
The same pattern is seem in the attitudes
towards lesbianism with 57% in Africa willing to delete a
lesbian gene as against 11% in Manchester (Q15a & b –tables 3.0 & 3.1).
The same negative attitudes are revealed towards disabilities
where 39% would terminate pregnancy among the African

respondents on the basis of severe disability as against 16%
in Manchester (Q20a – table 3.5).
Equally, a higher
proportion of the respondents in Africa (20%) would terminate
pregnancy on the basis of minor deformity as against 4% in
Manchester (Q20b – table 3.6). The same negative attitudes
are shown in the event of an increasing number of people withgenetic diseases, with 28% of the African respondents saying
they would resist the proliferation of the disabled group whilst
11% of the respondents in Manchester would use the increasein numbers of disabled people to justify the prevention of
disabled people from reproducing (Q23 –table 3.9).
In another survey conducted earlier in China – anotherdeveloping country - 89% would carry out abortion of deformed
babies whilst 85% would do so if there were a 5% chance ofgenetic risk (Macer 1994). Lo et al (1994) report that 34%
would delete defective embryos if the chance of genetic defectwere 1% and that a majority of the respondents in higher
education were in support of eugenics in China with 72%
willing to abort in the event of serious genetic defects whilst
87% would do so in the case of Down’s Syndrome. However,a December (2002) report in America shows that two thirds of
respondents approved of genetic engineering to cure serious
genetic defects whilst 70% rejected engineering for social
reasons. An earlier report has also shown that 9 out of 10
agreed with genetic engineering to cure genetic diseases(MORI 2001). Elmer-Dewith’s (1994) survey shows that 79%
of the respondents agreed that genetic engineering should be
used to cure diseases as against 16% who disagreed. Marchof Dimes (1992) reports too that 78% and 87% agreed to use
genetic engineering to reduce risk or cure fatal diseases
respectively.
Influences on genetic engineeringThat our cultural background influences our choice is noted
equally in both Africa and Manchester in the case of sex
selection with 26% and 21% answering yes whilst 32% and
42% said no respectively (Q10 – table 1.7). Scoffield (2000)
also reports that 80% of the respondents would reject pre-sex
selection of a foetus and 74% would not change the physicalmake up of their children either. This is equally the case inrelation to whether culture would have an influence on thedecision to design a perfect baby. Here too there is a close
range - 20% and 22% answered yes in Manchester and Africawith corresponding 46% and 43% saying no respectively (Q13
– table 2.3).
A similar range is seen in relation to whether
respondents would engage in genetic engineering even if themeans to do so were not equally available to everyone. Thusa high proportion of respondents from Africa (49%) and 46%
from Manchester would go ahead nonetheless (14c – table
2.6). Free access to the means of engineering influenced
more respondents from African (30%) than those from
Manchester (8%) with 35% and 57% refusing to designirrespective of whether or not genetic engineering was free
(Q12 – table 2.2).
It would appear that what other people dodoes have some influence on our decision to design. This isshown by the fact that among the respondents who refused todesign their perfect babies 18% in Africa would change theirmind as against 6% from Manchester if they observe thatpeople who designed their babies were obviously benefiting(Q14b – table 2.5).

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Eubios Journal of Asian and International Bioethics 15 (September 2005)

Results Tables
Note: The ‘Mann-Whitney Test’ statistical technique was used to test whether there was any significant difference between thetwo groups from Africa and Manchester.
Table 0.1 Question 1: Age group
Manchester Q1
Frequency
Under 18
24
19-39
363
40-65
2
Over 65
1
Total
390

Africa Q1
Percent
6.2
93.1
.5
.3
100.0

Under 18
19-39
40-65
Over 65
Valid missing
Total

Frequency
19
658
21
6
5
709

Percent
2.7
92.8
3.0
.8
.6
100.0

Frequency
22
642
22
5
10
8
709

Percent
3.1
90.1
3.1
.7
1.4
1.1
100.0

Frequency
269
439
1
709

Percent
37.9
61.9
.1
100.0

Frequency
20
679
10

Percent
2.8
95.8
1.4
100.0

Asymp. Sign. (P<0.0005)
Table 0.2 Question 2: How would you describe yourself?
Manchester Q2Africa Q2
Frequency
Percent
White
291
74.6
White
Black
17
4.4
Black
Mixed race12
3.1
Mixed race
Asian
60
15.4
Asian
Other
8
2.1
Other
Missing system
2.5
Valid missing
Total
390
100.0
Total
Asymp.Sign. (P<0.0005)
Table 0.3 Question 3: Gender
Manchester Q3
Frequency
Female
203
Male
187
Total
390

Africa Q3
Percent
52.1
47.9
100.0

FemaleMale
Valid missing
Total

Asymp.Sign. (P<0.0005)
Table 0.4 Question 4: Are you disabled?
Manchester Q4
Africa Q4
Frequency
Percent
Yes
5
1.3
Yes
No
384
98.5
No
Missing system
1.3
Valid missing
Total
390
100.0
Total
Asymp. Sign. (P< 0.013)

Questions 5-6: Comparative opinion on knowledge of human genetics and genetic engineering
Table 1.1 question 5: Have you ever been informed by health professionals (your GP, counsellor or Nurse) about developments
in human genetics?
Manchester Q5
Africa Q5
Frequency
Percent
Frequency
Percent
Yes
25
6.4
Yes
242
34.1
No
359
92.1
No
400
56.4
Undecided
6
1.5
Undecided
40
5.6
Total
390
100.0
Valid missing
27
3.8
Total
709
100.0
Asymp. Sign. (P<0.0005)
Table 1.2 Question 6: How much do you know about genetic engineering?
Manchester Q6
Africa Q6
Frequency
Percent
Very much17
4.4
Very much
Somewhat aware
207
53.1
Somewhat aware
Little awareness164
42.1
Little awareness
Never heard of it00
Never heard of it
Undecided2.5Undecided
Total
390
100.0
Valid missing
Total
Asymp.Sign. (P< 0.0005)

Frequency
44
138
364
128
17
18
709

Percent
6.2
19.5
51.3
18.1
2.4
2.5
100.0

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Eubios Journal of Asian and International Bioethics 15 (September 2005)

Questions 7: Comparative opinion on genetic enhancement for non-health related purposes – via genetic therapy andnon-gene therapeutic means
Table 1.3 question 7a: Do you think that free genetic screening for the purpose of identifying and treating genetic diseases is agood thing?
Manchester Q7a
Africa Q7aFrequency
Percent
Frequency
Percent
Yes
300
76.9
Yes
545
76.9
No
21
5.4
No
54
7.6
Undecided
68
17.4
Undecided
81
11.4
Valid missing
1.3
Valid missing
29
4.1
Total
390
100.0
Total
709
100.0
Asymp. Sign. (P<0.006)
Table 1.4 Question 7b: Do you think that human genetic engineering to enhance non-health related traits (e.g. colour, IQ, heightetc) should be allowed?
Manchester Q7b
Africa Q7bFrequency
Percent
Frequency
Percent
Yes
17
4.4
Yes
186
26.2
More likely to
20
5.1
More likely to89
12.6
Less likely to82
21.0
Less likely to
87
12.3
No
255
65.4
No
236
33.3
Undecided
16
4.1
Undecided
72
10.2
Total
390
100.0
Valid missing
39
5.5
Total
709
100.0
Asymp.Sign. (P<0.0005)
Questions 9-10: Comparative opinion on sex selection and influences on decisions
Table 1.5 Q8: If you could influence the appearance and behaviour of your child by means of vitamin supplements would you do
so?
Manchester Q8
Africa Q8
Frequency
Percent
Frequency
Percent
Yes
97
24.9
Yes
437
61.6
More likely to
117
30.0
More likely to86
12.1
Less likely to60
15.4
Less likely to
53
7.5
No
85
21.8
No
92
13.0
Undecided31
7.9
Undecided
27
3.8
Total
390
100.0
Valid missing
14
2.0
Total
709
100.0
Asymp.Sign. (P<0.0005)
Table 1.6 Q9: "Of course I knew that Max would be a boy. My husband and I chose him from the embryo we made. And when
I am ready to go through this again, I will choose a girl to be my second child. An older son and a young daughter - a perfectfamily” If you were in the above situation, would you select the sex of your baby to ensure that a son is your preferred first
choice?
Manchester Q9Africa Q9
Frequency
Percent
Frequency
Percent
Yes
16
4.1
Yes
287
40.5
More likely to
25
6.4
More likely to
69
9.7
Less likely to
35
9.0
Less likely to
66
9.3
No
302
77.4
No
231
32.6
Undecided11
2.8
Undecided
44
6.2
Valid missing
1.3
Valid missing
12
1.7
Total
390
100.0
Total
709
100.0
Asymp.Sign. (P<0.0005)
Table 1.7 Q10: Do you think that your cultural background would influence your decision to select the sex of your child?
Manchester Q10
Africa Q10
Frequency
Percent
Frequency
Percent
Yes
85
21.8
Yes
190
26.8
More likely to
66
16.9
More likely to120
16.9
Less likely to61
15.6
Less likely to
140
19.7
No
166
42.6
No
233
32.9
Undecided10
2.6
Undecided
13
1.8
Missing2.5Missing
13
1.8
Total
390
100.0
Total
709
100.0
Asymp.Sign. (P<0.001)

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Eubios Journal of Asian and International Bioethics 15 (September 2005)

Question 11: Comparative opinion on genetic engineering for health reasons
Table 1.8 Q11a: If you had the opportunity, and the techniques were perfectly safe, would you want to design your children inorder to avoid genetic diseases? (Design here means, for the purpose of health related improvement – cystic fibrosis, sickle cellanaemia etc.)
Manchester Q11a
Africa Q11a
Frequency
Percent
Frequency
Percent
Yes
170
43.6
Yes
461
65.0
More likely to118
30.3
More likely to83
11.7
Less likely to18
4.6
Less likely to
34
4.8
No
52
13.3
No
84
11.8
Undecided30
7.7
Undecided
37
5.2
Valid missing
1.3
Valid missing
10
1.4
Total
390
100.0
Total
709
100.0
Asymp.Sign. (P<0.0005)
Table 1.9 Q11b: Would you want to design your children? (Design here means, for the purpose of non-health related
enhancement that would conform to your preferred height, colour, IQ etc)
Manchester Q11b
Frequency
Yes
11
More likely to
24Less likely to
39
No
300
Undecided
16
Total
390

Africa Q11b
Percent
2.8
6.2
10.0
76.9
4.1
100.0

Yes
More likely toLess likely toNo
Undecided
Valid missing
Total

Frequency
209
97
78
271
42
12
709

Percent
29.5
13.7
11.0
38.2
5.9
1.7
100.0

Asymp.Sign. (P<0.0005)
Table 2.0 Q11c: If your answer to Question 11b above was either [yes], [more likely] or [less likely], would you want the new
characteristics of your designed baby to be transferred to your grandchildren?
Manchester Q11c
Africa Q11c
Frequency
Percent
Frequency
Percent
Yes
25
6.4
Yes
241
34.0
No
35
9.0
No
129
18.2
Not sure44
11.3
Not sure
103
14.5
Valid missing
286
73.3
Missing system
1
.1
Total
390
100.0
Valid missing
235
33.1
Total
709
100.0
Asymp.Sign. (P<0.0005)
Table 2.1 Q11d: If your answer to Question 11b above was either [No] or [undecided], would you design your own baby if the
majority of the population were doing so?
Manchester Q11d
Africa Q11d
Frequency
Percent
Frequency
Percent
Yes
18
4.6
Yes
60
8.5
More likely to76
19.5
More likely to50
7.1
Less likely to
32
8.2
Less likely to
36
5.1
No
188
48.2
No
267
37.7
Undecided
26
6.7
Undecided
33
4.7
Missing system
12
3.1
Missing system
1.1
Valid missing
38
9.7
Valid missing
262
37.0
Total
390
100.0
Total
709
100.0
Asymp.Sign. (P<0.0005)
Table 2.2 Q12: If genetic engineering were free, would this influence your decision to design your own perfect baby?
here means to design for health and non-health related purposes) (Perfect here means your own idea of perfection)
Manchester Q12
Africa Q12
Frequency
Percent
Frequency
Percent
Yes
33
8.5
Yes
213
30.0
More likely to76
19.5
More likely to
107
15.1
Less likely to34
8.7
Less likely to
64
9.0
No
224
57.4
No
250
35.3
Undecided
23
5.9
Undecided
51
7.2
Total
390
100.0
Missing system
1.1
Valid missing
23
3.2
Total
709
100.0
Asymp.Sign. (P<0.0005)(Design

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Eubios Journal of Asian and International Bioethics 15 (September 2005)

Question 13: Comparative opinion on influences on decisions on health and non-health improvement
Table 2.3 Q13: Do you think that your cultural background would influence your decision to design your own perfect baby?
(Design here means to design for health and non-health related purposes)
Manchester Q13
Africa Q13
Frequency
Percent
Frequency
Percent
Yes
81
20.8
Yes
162
22.8
More likely to
61
15.6
More likely to85
12.0
Less likely to
39
10.0
Less likely to
84
11.8
No
183
46.9
No
311
43.9
Undecided
23
5.9
Undecided
41
5.8
Valid missing
3.8
Valid missing
26
3.7
Total
390
100.0
Total
709
100.0
Asymp.Sign. (P<0.166)
Questions 14a-14c: Comparative opinions on IQ enhancement
Table 2.4 Q14a: "I just wanted to make sure that Max would have the greatest chance for achieving success. Having low
intelligence, a particular colour or being disabled or short height would clearly be a handicap'' Imagine you were in this situationand that a safe technique and reliable prenatal test were available to increase your child’s intelligence (IQ), would you use it?
Manchester Q14a
Africa Q14a
Frequency
Percent
Frequency
Percent
Yes
45
11.5
Yes
360
50.8
More likely to
62
15.9
More likely to
110
15.5
Less likely to45
11.5
Less likely to
62
8.7
No
201
51.5
No
122
17.2
Undecided37
9.5
Undecided
32
4.5
Total
390
100.0
Valid missing
23
3.2
Total
709
100.0
Asymp.Sign. (P<0.0005)
Table 2.5 Q14b: If your answer to question 14a was either [less likely], [no] or [undecided], would you increase your child’s IQ
if people around you were doing this and were obviously at advantage?
Manchester Q14b
Africa Q14b
Frequency
Percent
Frequency
Percent
Yes
24
6.2
Yes
130
18.3
More likely to99
25.4
More likely to50
7.1
Less likely to27
6.9
Less likely to
40
5.6
No
95
24.4
No
129
18.2
Undecided
34
8.7
Undecided
37
5.2
Valid missing
111
28.5
Valid missing
323
45.6
Total
390
100.0
Total
709
100.0
Asymp.Sign. (P<0.0005)
Table 2.6 Q14c: If the means to increase a child’s IQ were not available equally to everyone, would this influence your decision
not to increase your child’s IQ?
Manchester Q14c
Africa Q14c
Frequency
Percent
Frequency
Percent
Yes
104
26.7
Yes
117
16.5
More likely to
55
14.1
More likely to66
9.3
Less likely to
24
6.2
Less likely to
69
9.7
No
180
46.2
No
348
49.1
Undecided
23
5.9
Undecided
67
9.4
Valid missing
4.8
Valid missing
42
5.9
Total
390
100.0
Total
709
100.0
Asymp.Sign. (P<0.030)
Questions 14d-14e: Comparative opinions on height and colour engineering
Table 2.7 Q14d: Imagine that you were in the above situation (14a), would you want to improve the height of your child byensuring that he/she grows up to be at least 6ft tall?
Manchester Q14d
Africa Q14d
Frequency
Percent
Frequency
Percent
Yes
17
4.4
Yes
206
29.1
More likely to
19
4.9
More likely to96
13.5
Less likely to
35
9.0
Less likely to
101
14.2
No
300
76.9
No
232
32.7
Undecided18
4.6
Undecided
41
5.8
Valid missing
1.3
Valid missing
33
4.7
Total
390
100.0
Total
709
100.0
Asymp.Sign. (P<0.0005)

Eubios Journal of Asian and International Bioethics 15 (September 2005)

147

Table 2.8 Q14e: Imagine that you were in the above situation (14a), would you adjust a gene responsible for your child's skincolour? In your answer please indicate, where possible, what factor/s influenced your decision
Manchester Q14e
Africa Q14e
Frequency
Percent
Frequency
Percent
Yes
3
.8
Yes
80
11.3
More likely to7
1.8
More likely to50
7.1
Less likely to
14
3.6
Less likely to
77
10.9
No
357
91.5
No
404
57.0
Undecided
8
2.1
Undecided
42
5.9
Valid missing
1.3
Valid missing
56
7.9
Total
390
100.0
Total
709
100.0
Asymp.Sign. (P<0.0005)
Questions 15a-15b: Comparative attitudes to gay and lesbianism
Table 2.9 Q15a: Imagine that some reliable prenatal tests have shown that your male child has a particular gene that would be
responsible for his homosexuality, (gay's sexuality) if it were possible would you delete this gene? In your answer pleaseindicate, where possible, what factor/s influenced your decision.
Manchester Q15a
Africa Q15a
Frequency
Percent
Frequency
Percent
Yes
48
12.3
Yes
418
59.0
More likely to
31
7.9
More likely to
65
9.2
Less likely to
24
6.2
Less likely to
34
4.8
No
259
66.4
No
105
14.8
Undecided27
6.9
Undecided
48
6.8
Valid missing
1.3
Valid missing
39
5.5
Total
390
100.0
Total
709
100.0
Asymp.Sign. (P<0.0005)
Table 3.0 Q15b: Imagine that some reliable prenatal tests have shown that your female child has a particular gene that would be
responsible for her homosexuality, (lesbianism) if it were possible would you delete this gene? In your answer please indicate,
where possible, what factor/s influenced your decision
Manchester Q15b
Africa Q15b
Frequency
Percent
Frequency
Percent
Yes
45
11.5
Yes
409
57.7
More likely to
28
7.2
More likely to
65
9.2
Less likely to
25
6.4
Less likely to
41
5.8
No
262
67.2
No
104
14.7
Undecided29
7.4
Undecided
47
6.6
Valid missing
1.3
Valid missing
43
6.1
Total
390
100.0
Total
709
100.0
Asymp.Sign. (P<0.0005)
Question 16: Comparative attitudes towards discrimination
Table 3.1 Q16: If tests showed that a gene was responsible for our tendency to discriminate against one another, would you
want to remove the gene if possible?
Manchester Q16
Africa Q16
Frequency
Percent
Frequency
Percent
Yes
72
18.5
Yes
354
49.9
More likely to
94
24.1
More likely to88
12.4
Less likely to30
7.7
Less likely to
72
10.2
No
152
39.0
No
109
15.4
Undecided
39
10.0
Undecided
44
6.2
Missing system
1.3
Missing system
1.1
Valid missing
2.5
Valid missing
41
5.8
Total
390
100.0
Total
709
709
Asymp. Sign. (P<0.0005)
Question 17: Comparative opinions on regulation
Table 3.2 Q17: Imagine that there is now a growing freedom for people to design their children, would you agree that such
reproductive freedom should be regulated? (Design here means to design for health and non-health related purposes)
Manchester Q17
Africa Q17
Frequency
Percent
Frequency
Percent
Yes
268
68.7
Yes
313
44.1
More likely to
45
11.5
More likely to85
12.0
Less likely to
17
4.4
Less likely to
50
7.1
No
43
11.0
No
179
25.2
Undecided
17
4.4
Undecided
48
6.8
Total
390
100.0
Valid missing
34
4.8
Total
709
100.0
Asymp.Sign. (P<0.0005)

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Eubios Journal of Asian and International Bioethics 15 (September 2005)

Question 18: Comparative opinion on genetic engineering: whose interest?
Table 3.3 Q18: Following question 17 above, would you say that this reproductive freedom to design a baby is for the bestinterest of the child?
Manchester Q18
Africa Q18
Frequency
Percent
Frequency
Percent
Yes
33
8.5
Yes
194
27.4
More likely to
55
14.1
More likely to
107
15.1
Less likely to52
13.3
Less likely to
70
9.9
No
199
51.0
No
237
33.4
Undecided51
13.1
Undecided
64
9.0
Total
390
100.0
Valid missing
37
5.2
Total
709
100.0
Asymp.Sign. (P<0.0005)
Question 19: Comparative opinion on reservations on genetic engineering
Table 3.4 Q19: What reservation, if any, do you have about human genetic engineering? (Genetic engineering here means
designing human genes both for health improvement and non-health related purposes) (You may choose more than one option)
Manchester Q19
Africa Q19
Frequency
Percent
Frequency
Per.
Playing God
68
17.4
Playing God
135
19.0
Playing with nature
105
26.9
Playing with nature
153
21.6
Uncertainty
35
9.0
Uncertainty
57
8.0
Undecided
9
2.3
Undecided
82
11.6
None
4
1.0
None
18
2.5
Valid missing
169
43.3
Valid missing
264
37.2
Total
390
100.0
Total
709
100.0
Asymp.Sign. (P< 0.003)
Questions 20a-20b: Comparative attitudes to severe and minor disability
Table 3.5 Q20a: Imagine there was a genetic defect following a pre-natal test, would you terminate the pregnancy if the disorderwere considered by physicians to be a severe disability? (Severity here means learning difficulty, needing extra education,
having lung and digestive problems and in need of daily treatment and likely to die before adulthood)
Manchester Q20a
Africa Q20a
Frequency
Percent
Frequency
Percent
Yes
65
16.7
Yes
277
39.1
More likely to123
31.5
More likely to76
10.7
Less likely to
33
8.5
Less likely to
53
7.5
No
77
19.7
No
160
22.6
Undecided88
22.6
Undecided
99
14.0
Valid missing
4
1.0
Valid missing
44
6.2
Total
390
100.0
Total
709
100.0
Asymp. Sign. (P<0.0005)
Table3.6 Q20b: Imagine there was a genetic defect following a pre-natal test, would you terminate the pregnancy if the disorderwere considered by physicians to be a minor disability? (Minor deformity here means a non-life threatening deformity but which
may hinder to some degree the full fulfilment of life and life aspirations)
Manchester Q20b
Africa Q20b
Frequency
Percent
Frequency
Percent
Yes
17
4.4
Yes
148
20.9
More likely to
28
7.2
More likely to83
11.7
Less likely to10627.2
Less likely to
107
15.1
No
208
53.3
No
255
36.0
Undecided28
7.2
Undecided
68
9.6
Missing system
3.8
Valid missing
48
6.8
Total
390
100.0
Total
709
100.0
Asymp.Sign. (P<0.0005)
Questions 21-23: Comparative attitudes to caring for and increasing the number of the genetically disadvantaged group
Table 3.7 Q21: Caring for the less privileged people is justified by 'our moral responsibility to care for others' whether or not it isa huge burden on the welfare system or the state’s economy. This is a position I would support.
Manchester Q21
Africa Q21
Frequency
Percent
Frequency
Percent
Yes
228
58.5
Yes
490
69.1
More likely to111
28.5
More likely to98
13.8
Less likely to18
4.6
Less likely to
29
4.1
No
13
3.3
No
29
4.1
Undecided18
4.6
Undecided
25
3.5
Valid missing
2.5
Valid missing
38
5.4
Total
390
100.0
Total
709
100.0
Asymp.Sign (P<0.0005)

Eubios Journal of Asian and International Bioethics 15 (September 2005)

149

Table 3.8 Q22: In relation to Q21 above, you are told that the yearly costs to the government for one particular genetic diseasealone is about £200,000 per person, would this change your views?
Manchester Q22
Africa Q22
Frequency
Percent
Frequency
Percent
Yes
17
4.4
Yes
78
11.0
More likely to
32
8.2
More likely to55
7.8
Less likely to40
10.3
Less likely to
92
13.0
No
259
66.4
No
378
53.3
Undecided
40
10.3
Undecided
58
8.2
Valid missing
2.5
Valid missing
48
6.8
Total
390
100.0
Total
709
100.0
Asymp.Sign. (P<0.0005)
Table 3.9 Q23: Assuming there was an increase in the number of people with genetic diseases. Do you think that this increasejustifies society to prevent the 'defective' group from reproducing?
Manchester Q23
Africa Q23
Frequency
Percent
Frequency
Percent
Yes
43
11.0
Yes
203
28.6
No
248
63.6
No
294
41.5
Undecided
94
24.1
Undecided
152
21.4
Valid missing
4.8
Valid missing
60
8.5
Total
390
100.0
Total
709
100.0
Asymp.Sign. (P< 0.0005)
Questions 24b-24c: Comparative attitudes towards informed consent and genetic discrimination
Table 4.0 Q24a: Would you agree that a third party, without your consent, should share genetic information revealed during your
medical examination?
Manchester Q24a
Africa Q24a
Frequency
Percent
Frequency
Percent
Yes
8
2.1
Yes
89
12.6
More likely to
9
2.3
More likely to
32
4.5
Less likely to
21
5.4
Less likely to
65
9.2
No
331
84.9
No
435
61.4
Undecided
21
5.4
Undecided
44
6.2
Total
390
100.0
Valid missing
44
6.2
Total
709
100.0
Asymp.Sign. (P<0.0005)
Table 4.1 Q24b: Are you aware that it is possible for some employers or insurance companies to use your genetic information todiscriminate against you and your family?
Manchester Q24b
Africa Q24b
Frequency
Percent
Frequency
Percent
Very much aware
59
15.1
Very much
265
37.4
Somewhat aware87
22.3
Somewhat aware101
14.2
Little awareness94
24.1
Little awareness85
12.0
Never heard of it
148
37.9
Never heard of it
183
25.8
Undecided2.5Undecided
35
4.9
Total
390
100.0
Valid missing
40
5.6
Total
709
100.0
Asymp. Sign. (P< 0.0005)
Table 4.2 Q24c: Imagine that there were evidence to indicate discriminatory practices in 24b above would such practice preventyou from taking part in future genetic screening for yourself or pre-natal test for your child?
Manchester Q24c
Africa Q24c
Frequency
Percent
Frequency
Percent
Yes
86
22.1
Yes
140
19.7
More likely to
109
27.9
More likely to73
10.3
Less likely to
39
10.0
Less likely to
88
12.4
No
83
21.3
No
275
38.8
Undecided67
17.2
Undecided
72
10.2
Valid missing
6
1.5
Valid missing
61
8.6
Total
390
100.0
Total
709
100.0
Asymp.Sign. (P<0.943)

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Eubios Journal of Asian and International Bioethics 15 (September 2005)

Questions 25a & b: Comparative attitudes towards human cloning
Table 4.3 Q25a: ''Why the fuss about clones? There are many identical twins everywhere living their own separate lives. They
are never the same’’ Assuming cloning means creating a living genetic copy of yourself: if it were possible, would you clone
yourself?
Manchester Q25a
Africa Q25a
Frequency
Percent
Frequency
Percent
Yes
11
2.8
Yes
112
15.8
More likely to7
1.8
More likely to41
5.8
Less likely to
17
4.4
Less likely to
42
5.9
No
345
88.5
No
427
60.2
Undecided10
2.6
Undecided
51
7.2
Total
390
100.0
Valid missing
36
5.1
Total
709
100.0
Asymp.Sign. (P<0.0005)
Table 4.4 Q25b: If it were possible to adjust your clone in 25a above, would you want to remove from the clone habits that you
considered to be bad? (If your answer to 25a was [no] could you please answer 25b however assuming that your clone was
made)
Manchester Q25b
Africa Q25b
Frequency
Percent
Frequency
Percent
Yes
43
11.0
Yes
215
30.3
More likely to
52
13.3
More likely to
81
11.4
Less likely to27
6.9
Less likely to
44
6.2
No
213
54.6
No
143
20.2
Undecided36
9.2
Undecided
103
14.5
Valid missing
19
4.9
Valid missing
123
17.3
Total
390
100.0
Total
709
100.0
Asymp. Sign. (P<0.0005)
Question 26: Comparative attitudes towards regulation
Table 4.5 Q26: Please answer the following question only if you answered "Yes" or "More likely" to one or more of the questions
about engineering. If the kind of engineering you would want is prohibited in your country, would you then be prepared to go toanother country to have it done?
Manchester Q26
Africa Q26
Frequency
Percent
Frequency
Percent
Yes
29
7.4
Yes
173
24.4
More likely to
35
9.0
More likely to101
14.2
Less likely to19
4.9
Less likely to
73
10.3
No
93
23.8
No
134
18.9
Undecided
22
5.6
Undecided
49
6.9
Valid missing
192
49.2
Valid missing
179
25.2
Total
390
100.0
Total
709
100.0
Asymp. Sign. (P<0.0005)

Attitudes towards improving the characteristics of our babies
To the question whether the respondents would design
their babies in general (Q11b – table 1.9), a significantly higher
proportion of respondents in Africa said they would do so(29%) as against 2% in Manchester.
Similar results were
found in the case of attitudes towards improving the qualitiesof our babies via the use of vitamins (Q8 - table 1.5) where
24% and 61% respondents answered yes in Manchester andAfrica respectively.
This seems to reflect the result of an
earlier report in England where the respondents were up to 4
times as likely to use vitamins to improve the characteristics oftheir babies as against using genetic intervention (Marteau et
al 1995).
There is also a marked disparity in terms of how
respondents see low IQ as a socio-economic handicap. In
Africa, a significantly higher proportion of respondents (50%)
would increase the IQ of their babies as against 11% in
Manchester (14a – table 2.4).
These figures from adeveloping country can be compared with reports from aprevious survey conducted in America by Time/CNN where
34% would improve the IQ level of their children as against
62% who would not do so (Elmer-Dewith 1994). Two years
earlier, March of Dimes (1992) reported also that 42% agreed
with IQ enhancement as against 55% who disagreed. In an

earlier survey conducted by the American’s OTA (1986), 53%of the respondents disapproved of IQ enhancement whilst
44% were in favour.
Interestingly, there is a dissimilar response to the questionof whether engineering to enhance non-health related traits
should be allowed; with 4% and 26% saying yes inManchester and Africa respectively whilst 65% and 33% said
no respectively (Q7b – table 1.4).
This is so in relation to
attitudes towards height where 4% would increase the heightof their babies in Manchester whilst 29% would do so in Africa(Q14d – table 2.7). This is equally the case with attitudes
towards improving the skin colour with 11% willing to do so in
Africa compared with 0% in Manchester (Q14e – table 2.8).
Attitudes towards cloning are no different with 2% and 15%
saying yes and 88% and 60% saying no in Manchester andAfrica respectively (Q25b – table 4.3).

Attitudes towards discrimination per se
When asked whether respondents would remove an
identified gene that would be responsible for our tendency todiscriminate against one another.
39% in Manchester and
15% in Africa would not delete such a gene as against 49% in
Africa and 18% in Manchester who would delete the gene.

Eubios Journal of Asian and International Bioethics 15 (September 2005)
Are the respondents from Africa more in favour of equality ofopportunities and non-discriminatory principles?
This does
not appear to be the case considering the fact that
respondents from Africa were more likely to delete genes on
the basis of disability and different sexual orientation. Could
it be that the respondents from Africa become more tolerant
once the disabled people are born?

Reservations towards the new human genetics
Reservations about the new genetics and its regulation
appear to be equally shared, with reservations being mainly
concerned with the new genetics attempting to play God, tointerfere with nature and the uncertainty surrounding the new
genetics (Q19- table 3.4).
It would appear that thereservations helped to form attitudes towards regulation as an
overwhelming majority of the respondents in Africa andManchester were in favour of regulation (44%) and (68%)
respectively (Q17 – table 3.2). December (2002) reports alsothat a majority of the respondents were in favour of regulation
amidst the concern raised by a survey carried out one year
earlier where three-quarters of the respondents said that
regulation and policies on the new human genetics were notkeeping pace with new developments (adapted - MORI 2001)
There were similarities in the attitudes towards support forthe care of disadvantaged individuals, with 58% and 69% of
the respondents supporting the care of the disadvantaged by
the government, as 66% and 53% from both samples would
continue to support government care for the disadvantaged
despite the high cost (Qs 21 & 22 – tables 3.7 & 3.8 ). In an
earlier survey in a developing country - China, 61% of the
respondents also agreed that government should care for the
disadvantaged individuals rather than being cared for byindividuals (Macer 1994). It could be argued that the personal
choice of respondents from Africa in terms of their negative
attitudes towards disability and the propensity to design may
be related to the personal means of care given the fact that thesame respondents by contrast showed greater support for thegovernment to care on their behalf (unless the respondents
failed to realise that care by the government is via publictaxation). Even so, it could be argued, that unlike care by thegovernment, direct personal care by parents of disabledchildren involves psychological and physical care and support
hence perhaps the reason for termination of pregnancy (seeabove) and that perhaps public taxation is not a major worry
for parents in developing countries where there may beloopholes in tax payment.
There are some common grounds for the need to haveinformed consent before our genetic information could be
passed on to third parties with 84% in Manchester and 61% inAfrica in favour of consent (Q24a – table 4.0). There is also
a common agreement that the use of genetic tests todiscriminate in employment and insurance may prevent
respondents from undergoing genetic tests 22% in Manchesterand 19% in Africa (Q24c – table 4.2). MORI (2001) reports
too that an overwhelming proportion of respondents rejectgenetic discrimination in insurance and employment in UK.
The issue of international regulation of the new human
genetics and the inherent eugenic results can be put into
perspective when we look at human cloning and whether
people would be happy to be prevented from doing so outside
their own country. Here, responding to the question ofwhether the respondents would like to clone themselves 2% in
Manchester answered yes whilst 88% answered no.
In
Africa, 15% answered yes with 60% saying no (See table 4.3
Q25a). This seems to reflect the response from a previous
survey conducted by the Time/CNN (2001) where 5% of the
respondents would like to clone themselves as against 93%
who would not do so. What would the respondents who said

151

‘yes’ or ‘more likely to’ design their own children do if they
were prevented from doing so in their own country? I asked:
If the kind of engineering you would want is prohibited in yourcountry, would you then be prepared to go to another country
to have it done? In Manchester, 7% answered yes and no23% respectively. In Africa, 24% answered yes whilst 18%
said no (See Table 4.5 Q26).
This percentage can becompared with the report by Elmer-Dewith (1994) where therespondents when asked whether we should “make it possible
for nations to produce large numbers of individuals withgenetically desirable traits” 8% said yes as against 88% who
said no.
Specific implications for developing countries
Implications for developing countries such as those in
Africa must be viewed against the background that Africans
use up to 80% of traditional alternative medicine as a meansof healthcare, accompanied according to recent WHO report,
by increasingly adverse side effects.
We need therefore to
be mindful about how we incorporate the interface between
complementary medicine and conventional western mode ofhealthcare and about how we incorporate distinct traditional
values and cultural beliefs in any discussion about global
bioethics and how Africans and developing countries would
embrace, reject or regulate it.
It must also be gauged by
how others view Africa in relation to new human genetics
hence it was of great concern when Lyn (2001:192) whilewriting about eugenics and the use of incentives such as theuse of Norplant and welfare benefits in USA to discourage theunfit to have children argues that “the implementation ofschemes like these reminds us that eugenic measures that are
not politically feasible in the economically developed Western
nations can be introduced in less developed countries, where
public opinion is less sensitive to measures of this kind” .
The observable trends in the responses from Africa raisesome particular concerns for developing countries.
The
population of the African continent is expected to reach 1.5
billion by 2025 judging by the rate of population growth. It
currently hosts 800 million people – inclusive of an average of
10% of people with disabilities although it is reported that thisnumber could be higher in a more reliable data (Ndeezi 2001).
It has 13% of the world total population and having similar
problems commonly identified with the rest of the developing
countries around the world. Africans are not immune from theimpact of the human genetic revolution neither are they
completely in the dark if the findings above are anything to goby.
In many developing countries like Nigeria, a strong
patriarchal tradition and inequality issues remain embedded in
all aspects of socio-economic and political discourses not leaston genderation (Osakue & Martin-Hilber 1998).
These
inequalities and oppression in social relations remain largely
unexplored and under-reported.
As a result, female
reproductive autonomy in Africa where violence against
women is supported by cultural traditions (Sexwale 1994) ismore likely to be an illusion; thus the new genetics would not
only lead to a higher tendency to engage in genetic
engineering but would also reinforce female oppression as
girls/women would be more likely to be forced into terminationof defective embryos.
When it comes to healthcare provision, the limited funds
and shortfalls in infrastructure and human resources mean that
far less priority may be accorded to care of the geneticallydefective even though the respondents in this survey support
government expenditure to care for the disadvantaged
individuals. Limited healthcare resources mean that attention
would be diverted to other diseases whilst neglecting the needto care for the genetically disabled (WHO 2002). It is equally
a common feature that there is a significant shortage of152

Eubios Journal of Asian and International Bioethics 15 (September 2005)

qualified medical staff amidst the low level of general
education. The absence of educators invariably means thelack of genetic counselling within the context of preimplantation genetic diagnosis.
Would the situation be any
different for the participants in Africa who would not terminate
defective embryos if there were directive counselling or if they
were inundated with negative information about the social,biological and physical discomfort associated with disabilities?
Would the reverse be the case for those who were ready todelete defective babies for whatever reasons if they were
provided with enough evidence to show that indeed the life of
someone with a disability is worth living?
In the developing countries, there would be a greater socialpressure to use the new gene-technologies. This may comenot only in a rush to cure diseases (Radford 2001) but also ina situation where there is less tolerance towards disabledgroups (Stubbs 1997a) and where mishaps and misconducts
in scientific trials and application are more likely to result.
This would be in relation to our differences and sexual
disposition as shown by the negative attitudes towards
homosexuals and disabled people (See table 2.9 and 3.0
Q15a & b).
It is also the case that parents of disabledindividuals are more likely to be stigmatised for refusing to use
the gene-technologies to terminate defective embryos –assuming the gene-technologies were made available throughthe public healthcare system.
The stigma may becompounded by the influence of what others are doing (Seeabove) (Mehlman et al 1997).
The result is that for the disabled people who escaped the
net they are more likely to be discriminated against due tolimited resources to diagnose and to treat defective conditionsin the developing countries (WHO 2002) and where disabled
people are currently excluded from the mainstream socioeconomic and political services/activities like education andemployment (Stubbs 1997abc; Ndeezi 2001).
For example,
Ndeezi (2001:3) reports, “according to Uganda’s 1991
population census, 97% of people with disabilities do not haveformal qualifications”.
Disabled people in developing
countries are not provided with enabling support, for example,
structural readjustment. They are also not represented asthey are denied participation in the formulation of government
policies that affect them.
In fact, the disabled people indeveloping countries were accurately described as “poorest of
the poor, the most marginalized of the marginalized and themost voiceless of the voiceless” (Ndeezi 2001:4).
The ‘voicelessness’ means that informed consent isparticularly needed in developing countries because genetic
tests are automatically carried out without the necessary
counselling services. One outcome is that the full impact ofgenetic information on individuals is under-investigated.
Another outcome is that individual consent is conveniently
replaced by group consent and where, often, individual
consent is an illusion (WHO 2002). Before the awareness ofgene-technologies increases further in developing countries,
there is no better opportunity for the much needed regulatory
structure and processes to be put in place, for example,
having a body like HFEA in African countries. The need for aregulatory framework has been demonstrated by thedeveloped world in which platforms are provided to discussand address the inherent ethical, legal and social implications
raised by the new gene-technology, for example, the publicdebate over the safety of GM food in July 2003 in the UK (seebelow).
Thus the level of genetic discrimination and stigma in
relation to cultural context (for example, the impact of arranged
marriages and genetic testing) is more likely to lead to anabundance of unmarriageable females.
WHO recommends
that further research is needed to look at the associated risk-

benefits and other implications of genetic discrimination, forexample, the impact on individuals who take part in genetic
testing in developing countries whereby genetic information isdisclosed that may thereafter be misused in negative ways
(WHO 2002).
That there should be more research in developing
countries, which is compatible, sensitive, responsive,
adaptable and specific to local socio-legal, cultural and politicalcontexts, cannot be over-emphasised. There is an essential
need for more research on the new human genetics to unveilsocial attitudes as underpinned by traditional beliefs andcultural practices, so that local ethical and international
standards are not violated by the local users and service
providers in countries where deeper cultural, tribal andreligious values may be mishandled or misunderstood. Such
research should investigate how these beliefs and values may
influence attitudes to the forthcoming genetic services indeveloping countries. Further research is needed to provide
relevant genetic information on the use of genetic services inAfrica, hence the lack of references and research data that
predate my findings (Haynes 2004).
As noted above, developing countries have problems of
inadequate genetic training, education and genetic services.
As a result, there is an absence of healthcare professionals
with adequate genetic knowledge. When there is a high levelof genetic illiteracy among the top level of academia, it is not
surprising that 18% of the respondents in Africa have neverheard of genetic engineering. The correlation of knowledge
and education with views on whether or not to receive the new
genetics was shown in a previous survey where the lessknowledgeable they were the more the respondents were insupport of genetic engineering. This was also the case inrelation to how the least knowledgeable respondents thought itappropriate to practice genetic discrimination in insurance andemployment.
Furthermore, those who know least about
genetics thought that it was against nature and thus unethical(MORI 2001). But from the same poll, however, “opposition to
the use of genetic information by parents to choose thephysical and mental characteristics of children is higher among
those who are more knowledgeable about genetics 86%”
(MORI 2001:15). Similar to the responses from Africa, PHGU
(2003a) reports in the UK that 50% to 60% were ignorant
about the link between GM food and our genes.
The very low level of genetic knowledge among the
educated elite and educated medical professionals makes it
extremely difficult to provide effective grass-roots genetic
services and makes it particularly difficult to formulate genomic
policies in Nigeria, for example.
There is a great need for‘science journalists’, for more grand scale research to look at
the attitudes of the general public towards the new human
genetics and for all kinds of partnership and network thatshould include scientists from the developing countries in thedevelopment of the new genetics through, for example,
UNESCO (Rosenfield 1992). A joint effort is also needed to
discuss bioethics and to raise the level of public education andto increase public awareness in the developing countries(WHO 2002).
If not for the Eubios Ethics Institute in Thailand, Japan, and
New Zealand (Macer 1994), attitude surveys would have been
confined entirely to the developed world not least because
none has yet to be carried out in Africa (Lucki et al 1998). It
is interesting to note too that but for the South African
government, Africa would have been without any sign ofnational guidelines or policies on the conduct and applicationof the new human genetics. That there is a huge vacuum inAfrica in relation to policies on the new genetics is
compounded by the complete absence of a single regulatory
agency to monitor its progress.
Commentators in theEubios Journal of Asian and International Bioethics 15 (September 2005)
developed world often refer to the need to consider the ‘wider’social, ethical and legal implications of the Human Genome
Project and yet adopt a narrow definition of the word ‘wide’ torefer to New Yorkers to the exclusion of the remote citizens in
Tanzania or Lagos. This dismissal is erroneously based on
the assumption that the ignorant victims in the developingworld are better off not knowing or that they are not ready yet
to debate the ethical, social and legal implications or that they
have priority needs elsewhere. Perhaps Tanzanians ought toconduct their own surveys to examine the impact of the newgene-technologies.
The introduction of gene-technology into Africa per se is notwhat we should be concerned about. What is of concern are
the processes and application of the new human genetics andwhether there is the necessary framework and institutions tomanage it as well as the absence of public debate/opinion thatshould help to inform policy makers.
On the basis of thefindings above, it would appear that Africans have yet toconfront the moral crisis of the new human genetics via publicdebate.
The apparent lack of policies on reproductive
technology in Africa raises many further questions. Firstly,
how much do the policy makers, academics and the generalpublic in Africa know about the new genetics?
Secondly, it
raises the question whether policies can be formulated if thepolicy makers themselves are ill equipped with genetic
information.
Thirdly, can policies be formulated in theabsence of empirical evidence on the nature and level ofdisability discrimination, sex selection and eugenic practices
especially when the impact of these discourses on individualand collective interests is unknown? Fourthly, can policies beformulated without public opinions/debate on the socio-legal
and ethical issues raised by the recent developments inhuman genetics?
Lastly, can Africans formulate andimplement policies, for example, on the use of genetic
information, in a way that ensures data protection in some
corrupt systems (Moore 2004) and unsophisticatedinfrastructures?
The process by which the recent African
Union’s decision on human cloning was reached and the way
in which the safe use of biotechnology (refers to as a model ofbiosafety law) was adopted by Nigeria and South Africa
exemplify the dynamics of policy making in Africa.
Here,whilst Western policies were doctored and adopted by Africancountries without any form of consultation with interested
parties and potential victims in Africa, the latter was also
recommended as a model for other African countries toemulate. We should not adopt policies because our socioeconomic, political, cultural and religious beliefs are different.
As African respondents show some willingness to receive
the new genetics, what then is the nature of eugenic practices
and the rationale behind African attitudes towards people withdisability and people with different sexual orientation? The
receptivity of Africans can best be understood by reference tothe cultural context and cultural values (Macer 1994). Unlike
the popular population campaign in China that raises publicawareness, African respondents were not aware of any
government promotion or prohibition of eugenic practices
hence no close relationship exists between government
population control and individual eugenics except when it
comes to modern contraception and abortion (Su & Macer
2003). The decision to abort is left to the individuals and isdependent on whether the parents can afford to keep the baby
on economic grounds.
In answering the questions, therespondents were at liberty to respond without any fear of
breaking any rules (Su & Macer 2003).
Ojo (1995) reports that Africans use different methods ofbirth control including the notion that it was considered a taboo
for women to have sex during lactation until three years after
the birth of a child.
In Africa, the prohibition of marriage

153

within an extended family is often not regarded as strictly
unlawful just as the age of sexual consent is not a crucial issue
although these are seen as against traditional norms.
However, where this is the case, the enforcement of the law
and tradition is often rather shallow in some locality.
Amarriage between some ‘distant’ relatives can be consecrated
in a traditional way so that any rejection is seen in a traditional
sense (not on the basis of biology that identical genes may
collide thereby resulting in a defective baby) and only becausesuch a marriage is morally incomprehensible, in which case it
is not regarded as eugenic (Su & Macer 2003).
My personal knowledge provides a classic example of
African attitudes/policies towards others who are different,
particularly disabled people.
Inasmuch as government
policies on the care of the disabled are hard to come by andinasmuch as the government and individuals see the care of
disabled people as less of a priority, the survival of disabledgroups is left to individual parents/families to deal with (Ndeezi2001).
Until the early parts of the 1980s, the Nigerian
government, for example, were able to provide limited
sheltered healthcare for people who were unable to look after
themselves. Meanwhile, in some States in Nigeria, funds forthe limited care is reported to have been withdrawn since the1990s, in relation, for example, to the care of people who
suffer from leprosy. Again, from personal observation, lepers
are driven to the bushes where they are now left to fend forthemselves as many are seen begging around the motorways.
Some societies in Africa see the disabled person as a social
menace, in their view: we have not been able to look after theable let alone the disabled (my phrase).
Outside the medical profession, the causes of disability are
not often linked to biology. This lack of public awarenessabout causation lends itself to unreliable traditional myths that
disabled persons are people who have committed somecrime/sins etc during his/her previous life on earth (Ndeezi2001). It is also attributable to sins/crimes etc committed bymembers of the family particularly the mother of the disabled
person who may be accused of adultery to which, it isbelieved, she has refused to admit.
Disabilities in the
1950s/1960s perhaps even now were also regarded as
something contagious, for example, epilepsy amidst
superstition and ignorance (Ndeezi 2001). From first handknowledge (coupled with folklore stories), disabled people –including HIV victims (as with the unspoken conspiracy of theState above) were/are often devalued, scolded, stigmatised
and ignored by the State and are allowed to live in situations
full of inferiority complex and isolation (Eni 2003; Tolfree 1995;
Ndeezi 2001).
In some cases, disabled babies/children are
secretly killed by parents amidst the fact that the numbers of
those killed are unknown. Killing is premised on the notionthat it is better to spare the child a further agony in the future.
The disabled persons in developing countries are without any
united and organised disability movements and are more likely
to be accused of being witches/wizards and are more likely tobe the targets of suspicion when things are not going right in
the local community and may be seen as wanting somerevenge in view of their treatment and/or disability.
Theerroneous extension of the traditional belief is that the disabled
person becomes an ‘able’ person during witchcraft
meetings/activities at night and that he/she could enjoy theprivileges of being a non-disabled person only after trading
places with an able-bodied person who subsequently becomes
ill in real life as a result.
Apart from economic factors, African attitudes towards
others who are different are shaped by cultural traditions.
African attitudes towards homosexuality were clearly
evidenced by the rejection of Gene Robinson as an Anglican
gay clergyman in the US (see table also) (Dodd & Bates

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Eubios Journal of Asian and International Bioethics 15 (September 2005)

2003). This is because the African concept of humanity andthe resulting decisions are underpinned by strong andunswerving traditional beliefs some of which have been mixed
with orthodox religions, for example, Christianity.
In thiscase, if an act is not in the religious scripture, it is to becondemned as immoral (Orisakwe 2003). This is supported by
an opinion poll suggesting that religious background does
influence peoples’ decision about the new genetics.
Sussman (2001), for example, reports that 36% of the
respondents were influenced by religious beliefs on their views
on cloning and that 16% were influenced by their education as
well as by formal media news (15%).
The influence ofreligious beliefs on the decision to refuse the new genetics isshown too by MORI (2001) in which those influenced byreligion were more likely to oppose the new genetics as wellas the report by Time/CNN poll (2001) where 34% were shown
to be influenced by their religious beliefs towards the idea ofcloning.
It is clear from the data that African respondents haveaversion to homosexuality as they see homosexuals as those
who become what they are by choice and those who havedeviated from the traditional norms. They see homosexuality
as contrary to the spirits and wishes of their ancestors and that
if their ancestors did not practise it, it must not be accepted as
normal; such behaviour is seen as a taboo, a curse, a sign ofmental illness, all of which lead to death (see above). This isbecause centuries of ancestral relations continue to havesome significant impact on relationships between individuals
and continue to influence decisions made by contemporaries.
They see homosexuality as a medical condition that is curable
through prayers, rituals and/or medical intervention. Whilst
homosexual acts are carried out in the strictest secrecy,
homosexuality is no way publicised because it is seen as antiBible, an aberration and a sign of moral decadence, somethingthat is alien to African cultural and religious ways of life, andseen as cultural imperialism of the western world that must be
rejected by every means necessary (Orisakwe 2003).
The corollary of this die-hard attitude (the belief that anembedded tradition once formed is difficult to change) is put
into perspective when we examine the practice of levirate andwidow inheritance in some parts of Africa which could becalled an ‘Oedipus complex’ (Britton 1989; Greenberg 1991).
The act of levirate and widow inheritance involves a system
whereby a brother/son may inherit, as a wife, the widow of his
late father/brother on a temporary and permanent basis
respectively (Ciira 2001; Fortes 1983). Paradoxically, whilst
it is acceptable for Africans to adjust to western ways of life,
they consider certain values/practices like homosexuality,(acceptable to a large degree in the west) to be unmentionableabominations that are not negotiable by western education or
philosophical enlightenment just as levirate and widow
inheritance may now sound morally wrong in the West (Roper
1994).
Another problem is the question of pride and crisis ofcultural identity.
It is true to say that whilst cultural identity
may be fragmented, fragile and multi-faceted, (Hall 1992)
many Africans see economic poverty as a plague and seesome benefits in the context of modernising and politicising
mythical belief in witchcraft and other ancient superstition(Geschiere 1997) yet they take pride in cultural identity
enshrined in a tradition that avoids the negativity of modernity.
They believe that extreme extension of socio-economic andpolitical freedom and development breed moral decadence
therefore the need for a denial of social freedom for individuals
who wish to break away from cultural norm. They see therelative absence of paedophiles and homosexuals in African
society as a moral comfort zone – a comfort zone to promotepride and prejudice.

Resolving intercultural differences.
How then do we break into the comfort zone to resolve
negative attitudes towards disabled people and people whoare simply different in Africa? This is a huge and problematic
task. Efforts to change policies and public attitudes need to
identify the ultimate direction of change in terms of whether weare aiming for total acculturation, assimilation or integration of
our differences as well as the kind of people to be changed.
Whilst it need not be emphasised here that the international
bioethics framework to regulate the new genetics is equallyapplicable to Africans, solutions specific to the problems raisedin Africa must work jointly with other wider solutions.
Negative attitudes as expressed in this survey and othersurveys in developing countries require multiple culturaleconomic intervention strategies and require a different
emphatic approach.
The fact that the respondents in thesurveys were influenced by economic factors suggests that theprovision of infrastructure for disabled people and theintroduction of welfare benefits and other support mechanisms
for parents of disabled people in developing countries would
significantly change negative perception of disability, but this is
an approach that appears to be economically unsustainable
within the short term.
No society is homogenous and African communities are no
exception. There are a range of traditions and opinions someof which carry unchanging ethical traditional values andunchanging conventions.
Such African heterogeneous
societies harbour people who may be classified as bigots andare unwilling to change their rigid and dogmatic criticism ofanti-cultural developments; i.e. those who are staunchly
intolerant and conservatively resistant to cultural changes andthose who would maintain negative attitudinal judgement on
sexuality and disability come what may.
Within thesesocieties there are also libertarians who are readily willing toadjust to modern cultural transition as they see culture as
something constantly evolving.
There are also people who
are willing to change but who may be reluctantly nostalgic
about disavowing traditional values.
In optimistic terms, thestarting point in our attempt to promote harmonious
interpersonal relations is to focus attention on the latter two.
To bridge cross-cultural differences through changes inpublic attitudes one needs to address the very foundations ofcultural tradition and the foundations of other forms of social
relation on which the rejection of disability and otherness are
based. Implementing changes within the context of different
social and cultural groups in Africa calls for a need todemystify the core beliefs and mindset that underpin theperception of disability from religious, cultural, socio-economic
and political discourses. Whilst it is recognised that moral andethical traditions are modifiable, changing public negative
perceptions in the context of international ethics requires a
gradual process of public enlightenment in which the media
and social movements such as the disability rights movement
would have significant parts to play.
Media and pressuregroups are powerful forces renowned for helping to shapepublic reception of a given issue. Agents of change in Africa
therefore need the assistance of the mass media and thesocial movement if they are to make a meaningful inroad tochanging public attitudes, biomedical ethics and institutional
policies. In situations where the interests of the local media
are prioritised, international social movements andinternational media need to assist (or collaborate) with local
institutions to bring about positive results in public attitudes
and public policies.
In this direction, a careful but progressive approach isneeded to weave individual values into collectively sharedvalues; hence positive attitudes towards homosexuality would

Eubios Journal of Asian and International Bioethics 15 (September 2005)
require a realignment of thought processes.
Thus theevolutionary process (as against the cultural crusade or
revolutionary approach) to address the emergence ofmodernity and new equalities must be followed by a strong
relentless commitment to a sustainable future.
Changing
embedded cultural values by way of indoctrination, therefore,
would require long and concerted effort to negotiate modernityof sexuality and old cultural traditions because individual andcommunity values in these contexts have been cultivated andmaintained for many centuries in Africa. Not to do so would
be seen as taking an anti-traditional approach that questions
the very rationality of African ethical and moral judgement justas it would be regarded as ideological interference withtraditional values and rights of indigenous people who are notkeen to embrace what may be seen in the west as enlightenedlibertarian perspectives on disability and sexual orientation.
Whilst a given African convention may be largely unwritten,
it carries with it a strong sense of legal authority and as suchthe present generations see obedience to current traditional
authority as not only a duty to maintain but also a duty totransmit such inherited values and, in their view, sacred virtues
to their progeny. It is important therefore to address negative
attitudes from a legal perspective by introducing civil andcriminal laws to provide a legal framework for control in Africa
just as anti-discriminatory laws such as the Disability
Discrimination Act 1995 and Sexual Offences Act 1967 in the
UK serve to deter people from discriminating against disabled
people and people with different sexual orientation.
It mustbe noted, however, that despite disability laws and other social
movements in the developed world homosexuals and disabled
people have yet to be fully integrated. Thus, immediate andurgent results cannot be expected in Africa.
Another
extremely important way to resolve the problems ofintercultural differences is to raise public awareness about thebenefit of biological and cultural diversity and social inclusion.
Educating the ‘educated’ and the public about the concept of‘live and let others live’ and about learning to accept ourcultural, social and biological differences is an ideal way toachieve social integration of those whose behaviours are
regarded as alien but changing public attitudes through mass
education has its own inherent shortcomings.
As religion relinquishes its stronghold in many developed
countries, the opposite is the case in many African countries
where certain orthodox religious values are not negotiable.
There is the need to reconcile individuals and secular views
within a multicultural society with different religious, traditionaland modern values (Guerra 1994).
For example, we(including people in developed countries) need to reconcile
different religious and cultural interpretations of the status ofan embryo that helps to shape the perception of disability,
abortion, sexuality and cloning. A change agent in Africa andbeyond must therefore find ways to negotiate with religious
authority (authority that has a very significant influence overthe behaviours of millions of people) to find a common groundin relation to acceptance of homosexuality (Bates 2004;
Doward 2004).
Anglican authorities recently re-evaluatedtheir strong views on the use of condoms as a form ofcontraception in light of the benefits of using condoms toprevent the transmission of HIV/Aids (BBC1 News 24th
September 2004). Thus if an extension of moral adjustment
is to be made in this direction, a change agent must engage inconstructive dialogue with religious leaders and religious
industry to accommodate new frontiers not only with a view toensuring that morality moves with modernity but also to ensurethat religiosity is re-examined in terms of its unbending
attitudes towards homosexuality and the resulting impact on
individuals and society (Voegelin 2000) (Guerra 1994).

155

Correlations of surveys, democracy and regulation
But what is the relevant link between the consumer public,
democracy and regulation in formulating global regulatory
policy when respondents’ choices may not reflect theirinnermost intentions in practice? Amidst the controversies
that surrounded Tony Blair’s wilful disregard of public opinion
against the Iraqi war in polls in 2003, is it wise to entrust to
officials the mandate to make decision on complex issues or torely on the opinions of a relatively few respondents inquestionnaire surveys?
Should government distance itself
from the data from Africa and Manchester and the data fromvarious other attitude surveys because they are not globally
representative? In relation to validity and ‘predictive values’of attitude surveys, the question remains whether or not moreor less of the respondents in this survey would do so inpractice (Wert 2000). We can only hope therefore that no one(very unlikely) or a smaller number of the respondents would
do so in real life without any clues about the implications of the
choices they have made or are about to make.
These choices may be influenced by a number of socioeconomic and political factors.
Respondents may express
their views without necessarily possessing sufficientknowledge of the implications of their choices (http:www.news-medical.net/?id=2839).
Mobilisation of public
opinion therefore may be accompanied by inadequate
knowledge/information about treatment and moral discussion
raised in this thesis.
This is not to suggest that rational
decisions made by respondents ought to have been shaped bysome detailed grounding on social, political cultural and ethicaldimensions.
Rather rational decision could be merely
simplistic or merely congruent with an individual-centred
approach to their values in life.
The regulatory outcome of attitude surveys in terms of
behavioural consequences is difficult to measure because ofnumerous variable factors such as personal experience ofdisability within the family and other familial circumstances ordue to a single event such as a positive scientificbreakthrough, scientific disaster or the result of reactions toaccumulation of events between the time of the survey and thetime of practice. Individual choices therefore depend on theextent in which the respondents were influenced by theinternal and external circumstances and whether or not thesame circumstances exist also at the time in which opinions
are activated.
From an international regulatory framework,
national politics would be influenced by different local politicalsystems, for example, constitutional, fundamental ethical andmoral principles.
One way of looking at this is to examine
whether ethical values are inborn, in which case positions
taken by individuals in these surveys have nothing to do withexternal moral conviction, information or misinformation byinterest groups or public debate, and whether respondents
were simply echoing public sentiment or attuning to theprevailing cultural norms.
A truly democratic government meanwhile has the politicalmandate to govern and lead the public rather than the otherway round.
One advantage of policy making by political
officials, it could be argued, is that the traditional policy making
processes allow policy makers the opportunity to engage indetailed scrutiny before making a final decision unlike therespondents who may spend a few minutes on a survey
questionnaire.
The relevance of a public survey to policy
making vis-à-vis its value in empirical analysis depends onpolitical dynamics and assessment of the current and or
possible systemic impact on a whole range of issues such as
the benefit and risks to individuals and communities including
political, philosophical and educational orientation of policy
makers and the degree to which the policy maker is preparedto risk his/her political career.

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Eubios Journal of Asian and International Bioethics 15 (September 2005)

It is the policy makers who have the political mandate toexercise discretionary power to justify political judgement or toyield to public opinions. But in reaching regulatory decisions
leaders need to balance various competing interests such as
the sensitivity and complexity of issues that may require
specific or specialised response including any shift in public
opinions irrespective of whether or not public opinions havethe political privilege per se to change the incumbent
government. The decision must also note the opinions of theminority who are then forced to accept the verdict of the
majority in an opinion poll as well as the competing ideology ofother constituents.
This would involve weighing andcomparing factual information against public moral sentiments
whilst considering the resultant wide-ranging implications(Holder-Williams 19970). Such political decisions would haveto take on board the question about the nature, source andengineers of opinion polls to avoid being misled by ‘expert
public/media and other pressure groups that may well be
pursuing subtle interests under the pretence of public opinions.
This is because external pressure may come to bear on
researchers who more often than not are able to initiate issues
and topics that shape survey questionnaires leading toconclusions that respondents were never well informed andthat such attitude survey results were not truly representativeof public opinions.
As a result, it could be argued,
government (taking the view that opinions do not control
government policies) may be best suited to take the lead on
regulatory policy by ignoring public sentiment and refusing to
be responsive to public surveys (Holder-Williams 1970).
Value of opinion polls
Opinion surveys, I would argue, are not merely based on
hypotheses and probability theories because opinion polls
serve some useful purposes in regulatory schema despite thepossibility of change of heart or dishonesty on the part ofrespondents. Historical records show that public opinions arecomplicated, fragile and easily swayed in different directions
and are not usually empirically verifiable against original
standpoints, but the acknowledgement of flexibility of public
opinions has neither change the value of surveys nor negatedthe benefits of public polls in principle and in practice (OECD1998; Holder-Williams 1970:3). As noted above, the reality ofsurveys is that it is impossible to predict how respondents’contemporary views would subsequently be translated into
practice except to rely on hope and assumption that the
respondents would stick to the original viewpoint.
The attitude survey continues to be a significant yardstickby which to influence, educate and inform policy-making andto galvanise support for specific interests. Whilst citizens havethe opportunities to take part in representative democracy, theopinions of the public are recognised through, for example, theuse of referenda whereby public opinions are used to rubberstamp or effect legislation. This is demonstrated by the use ofdifferent referenda in different countries to settle national
issues such as the use of a referendum to decide issues offundamental importance e.g. membership of the EEC by the
British government in 1975 (Tolbert 1998; Kobach 1993).
This is a form of direct democracy in which citizens areenabled to make policies without the involvement of politicians
as intermediaries. This means that citizens can have a direct
influence on how they want to be governed (Travis 2004;
Glaister 2004).
Public attitude surveys are used to aid
political processes in which citizens are able to propose andinitiate public policies through the grassroots.
Some haveobserved, however, that despite the wide use of initiatives byinterest groups only a limited number have political outcomes(Gerber 1998; Banducci 1998).

With the emergence of this brand of direct democracy,
attitude surveys become increasingly useful in influencing
regulatory policies and serve to shape/reform politicalprocesses not only in constraining political decisions but also
importantly, in the regulation of ethics when legislators are
faced with dilemmas over many of the ethical and moral
decisions raised by the new genetics. In this way, governancepolicies and the autonomy of the State may be duly
constrained by political pressure on unresponsive, inefficientand dictatorial government and at a time of public distrust anddissatisfaction with government by drawing public attention tocertain issues prevailing at a given time (Banducci 1998;(Tolbert 1998:171). This pressure becomes more decisive
when politicians use survey findings as bargaining tools at
elections to negotiate strategic decisions especially whenpolitical opinions are divided on whether or not to regulate.
Whilst the prime results of surveys may not necessarily
lead to immediate policy changes, they tend to highlightimportant issues for relevant constituencies such as thedisability rights movement, the benefits and risks to current
and potential victims of stem cell intervention and helping tomaintain and modify the status quo and the basis for further
action.
The results of attitude surveys from Africa andManchester and elsewhere are useful in modifying theregulatory framework as they give citizens the chance toinfluence responsible governance policies and provide an
opportunity for individuals to express their views, values andchoices without necessarily being influenced by media
allegiance and party alignment (Hodder-Williams 1970).
Respondents can decide freely on issues of individual moral
values and moral convictions in life.
Opinion surveys give
support or lack of support to many audiences and many
perspectives, however fragmented they may be, and oblige
policy makers to be cognisant of public wishes.
Publicopinions help to generate a focal point for political discussion
and provide emerging trends in public views (Burkeman
2004a/b). At the same time, they allow policy making to be
more responsive and reflective of public desire. The fact thatpolicies initiated by citizens are on the increase (fuelled byopinion polls) goes to show how the rights of ordinary citizens
have become embedded in local and international political
discourses (Kobach 1993; Banducci 1998; Patterson 1998).
The opinion poll industry provides a decisive influence on
analytical ground for huge academic, journalistic and politicaldebates just as political campaigns and political progress areoften centred on the position of public opinions.
Commentators have frequently cited and relied heavily on
statistics from surveys to substantiate their position or to shedlight on sensitive and important issues as survey results serve
to initiate ideas, control and guard policy makers onundercurrent issues.
They also complement and offer
alternative ways of decision-making as well as helping tocommunicate the ideas of the governed to governors bystimulating government to become public-conscious.
International attitude surveys prevent monopolistic andpaternalistic
government
approaches
toregulatory
frameworks, thereby limiting constraints imposed by regionaland cultural values and political dynamics (Kobach 1993;
Ginsberg 1964).
This view raises the question, however, whether there
comes a point at which the popular decision is sooverwhelming that it almost requires a dictatorial regime tooverturn the voices of the masses.
Whilst various and yet
isolated public attitude surveys in different countries cannot betaken to be international referenda, national referenda tend to
give power to the citizens in relation to controversial issues
whereby the power of the representative democracy becomesEubios Journal of Asian and International Bioethics 15 (September 2005)
minimised or superseded.
Global regulatory frameworks
become problematic in an attempt to reconcile different States’
recognition of public opinions from one or two countries.
In
Switzerland the citizens control referenda so that the
government is more prone to act on wishes of the people who
may initiate issues on referenda agendas.
But in othercountries,
especiallynon-democratic
countries,
theacceptance of public views becomes difficult where provision
for direct democracy is not endemic in political systems andwhere government tends to pay less attention to public views(Kobach 1993).
Making a case for regulation
It is worth reiterating the fact that the core theme underlying
this thesis is the necessity for global regulation of libertarianeugenics and that the approach here is to mount a holistic
argument in favour of regulation. To ignore the necessity for
regulation is to promote its discriminatory implications forindividuals such as negative attitudes towards disabled people
and other disadvantaged groups as raised and to leave
untouched the problems of unlimited reproductive freedom forparents and others to do whatever they like with humanembryos. Not to focus on the necessity for regulation is to beapathetic about the pace and the uncertain risks
accompanying developments in the new human genetics andto ignore our historical past.
Despite reservations about whether public opinions as
expressed through attitude surveys are indeed democraticenough and whether the findings in Manchester and Africa areenough (bearing in mind factors such as the number of
respondents) a case can be made for global regulation in viewof the above issues. In addition, the data from the survey inthis chapter and other similar surveys offer crucial evidence inthe form of overwhelming support for the need for regulation
and revealing too that control needs to be addressed from a
global perspective.
A number of findings from the data in
Manchester and Africa can be used to justify a case forregulation, for example, that people are prepared to delete
embryos on the basis of minor or severe disabilities (seeabove).
The fact that an overwhelming number of
respondents agreed to global regulation is by itself sufficient tojustify a case for regulation. This is in view of the fact that theexisting local control framework remains skeletal, inaccessible,
poorly co-ordinated and poorly monitored and that in many
areas/countries policies are absent leaving current andpotential consequences largely un-assessed (Blank 1990;
Tribe 1973; Dixon 1997).
As a result, whilst attitudes vary from time to time due toambiguity and inconsistencies in semantics such as thelanguage/terminology used in survey questionnaires, it ispossible to make a case for the need for universal control of
the new genetics.
Justifying a case, however, may dependon how individuals view the issue. First, the fact that the
respondents were overwhelmingly fearful of undergoing
genetic tests or disclosing genetic information to theiremployers/insurance companies because of the resultant
genetic discrimination should suffice by itself to raise aconcern.
Second, that an overwhelming majority in thissurvey are in favour of regulation is a confirmation of an earlier
survey in which an overwhelming majority also supported
regulation by an international institution like the UN or WHO)
(Macer et al 2000). That people would travel (have done so)to another country to achieve their engineering aims is anotherreason why international regulation is necessary (see also
data from Manchester and Africa). Noted but not addressed
are several overviews suggesting innumerable points fordiscussion as there is much anecdotal evidence that
substantiates current and potential negative implications of the157

new eugenics (e.g. the ‘signs of the times’ in chapter 2 above).
It is evident that my findings echo other similar studies in termsof how attitudes towards disability in developing countries(Africa and China) are unfolding.
This significant finding
cannot and should not be dismissed without further
investigation if we are serious about the implications of DIY
eugenics from a global perspective.
As discussed above, a comparatively higher proportion of
respondents in Africa are ready to embrace the new genetics.
The tendency is reflected in responses to all the questions in
the questionnaire. Could this be attributed to the low level ofawareness of genetic engineering which otherwise would havealerted the respondents more to the potential benefits andrisks? Could higher levels of genetic information and publicdebate/exposure (as in Manchester) have shifted the stancetaken by the African respondents? There is no doubting thefact that some of the reasons for the negative attitudes
towards deformities are socio-economic, as disabled children
would have no particular use to parents in developing
countries like Nigeria and China except to become liabilities inpolitical systems that have no welfare system to assist parents
and carers of disabled people in contrast to Manchester where
social services are available for people with disabilities (Su &Macer 2003).
A look at the ‘general comments’ shows theoverwhelming negative attitudes towards homosexuality
among the African respondents and suggests a historicalrevulsion against what the respondents refer to as ‘abnormal’an abomination, unnatural and against religious and cultural
norms. Whilst the number of respondents who said that theywould increase the IQ of their babies was 11% in Manchester,
this is perhaps insignificant from the viewpoint of those whoare in support of the new genetics on the basis of its having a‘small impact on the gene pool’.
It cannot, however, beemphasised enough that small though this percentage is, it
raises some serious concerns about the impact on a single
individual as well as aggregate implications for the gene pooland that 50% in Africa is particularly worrying in a ‘policy
vacuum’ and unsophisticated monitoring system where theclass divide continues to impact on disadvantaged individuals(See Q14a - table 2.4).
What these findings suggest is that as people argue in thewest that the new genetics would lead to hope of eliminating
debilitating diseases and against disadvantaged individuals,
the impact is more likely to be doubled for Africans. Therefore
when you think that the possible positive impact of the new
genetics would be 20% in the West, it is more likely to be 40%
in Africa - which may well be good news. On the other hand,when you think that the negative impact would be 20% in theWest, and is more likely to be 40% in Africa, this may be badnews for us. This is more reason perhaps why we in Africa
and indeed, developing countries in general ought to be more
prepared than anyone else, and indeed have a need for global
regulation.
National regulation would be ineffective as exemplified bypractices in Germany in relation to PGD where a ban meansthat Germans/companies simply go to England to circumventthe restriction on stem cell therapy and cloning or whencouples in England now travel to America for designer saviour
siblings etc (Hawkes 2002; Fukuyama 2002). Here too, asignificant number of African respondents were more willing totravel to other countries for this purpose (see above).
For
Macer, an international regulatory approach is required
because of the inability and/or unwillingness of some countries
to formulate adequate guidelines and because there are
already “precedents for international law to protect humanity’scommon interests” in almost every socio-economic andpolitical discourse and because of the “shared biological
heritage” and global “perceptions of bioethical reasoning”

158

Eubios Journal of Asian and International Bioethics 15 (September 2005)(Macer 2000:139). It is therefore acknowledged that the new
genetics raises issues of commonality - shared impact byvirtue of humanity; thus there are areas that require barriers
beyond which transgression is prohibited and that we cannot
ignore developments in genetics as we are all affected by its
wide-ranging ramifications (Blank 1990).
The European
Communities’ common scheme is already monitoring andapproving the use of drugs on an international scale (Walser
1998; Fukuyama et al 1999; Macer 2000).
As Warnock(1967) argues in a different context of harms to future
generations, moral principles work best at universal level
rather than being group-bound in order to avoid moral conflicts
and non-cooperation arising from specific groups.
The common harmonisation could be justified on the basisof historical scandals associated with self-regulation byscientists and industries (McNeill 1993). The historically badrecords of inefficiency levied against international institutions
should not deter the setting up of another institution.
Onemajor aspect of human development is the ability to learn frommistakes and bad practices.
Learning from the current
loopholes and history is not a guarantee against failure but theregulatory odyssey has to start from somewhere.
If it is tostart, it should start from the precedents and platform set byinstitutions like HFEA in the form of a new global HFEA.
Such a move “requires the nation-states to harmonise theirregulatory policies” (Fukuyama 2002:194) and requires others
to adopt new guidelines on ethical practices (WHO 2002).
Thus the content of this international regulation at the
moment remains vague and uncertain and it is indeed very
difficult to formulate or to accept common legal grounds
because of the diversity of national and individual values,
customs, traditional, religious, cultural and political practices,for example, emphasis on individual rights in the US (Blank
1990).
As with international treaties, there are further
problems of ratification, adoption and adaptation to unified
norms by individuals and communities, hence the failure tocommit to international obligations (Gruchalla-Wesierski 1984;
White & Abass 2003).
This is illustrated by the current
unhealthy economic relationship between the US and theEuropean Union (EU) over whether the imposition of a 5-year
moratorium by the EU violates the rules of the international
trade agreement because according to the Americans the EU
fails to provide ‘scientific evidence’ of the risk of geneticallymodified food to the public.
The EU insists that themoratorium is in line with the international trade regulatory
rules that allow nation states to take into account national
interests and to develop their own appropriate approval
procedures in accordance with the fears and concerns raisedby the national public (Pegg 2003).
Thus any convergence at international level would require“persuasion, negotiation, economic and political leverage”(Fukuyama 2002:192-4) if we are to unify the different
ideologies, culture and philosophies of each country including
the notion of political sovereignty of each member nation.
The independence of nation states inhibits the ability of an
external body to investigate internal practices for reasons ofrights and/or treaty violations – violations underpinned bysubtle ideological and socio-economic interests (Kohona1985).
However, the role of a centralised regulatory
agency/framework is to ensure that an international approachpays attention to internal standards, diverse views andcultures rather than operating under an assumption of
uniformity (Macer 2002).
There is a further reason for a global bioethics framework.
That is the need to solve communications problems between
countries because of fragmentations in our understanding ofour different cultural and moral values. Regulation would be
impossible if participants were unable and unwilling tounderstand mutual languages, culture, religion and moral
standing, indeed, misunderstand the direction of the new
genetics and humanity. A global view of the success andproblems of the new genetics would enable ‘affected’individuals and countries to have an independent voice inregulation.
At the moment, developing countries and‘disadvantaged publics’ in both developed and developing
countries, for lack of means, knowledge and interest, areunable to participate fully in public discussion and are neither
encouraged nor enlightened about the morality of the new
genetics. Yet it is the disadvantaged groups that are by every
measure more likely to suffer from regulatory failure. As aresult, non-scientists in the west and consumers in developing
countries are seen only as simple consumers and recipients of‘handout policies’.
There needs to be a shift from the regulatory model
dominated by the current west-led scientific-bureaucratic
decision-making process towards an international platform for
public debate and consultation. Full integration would enable
a wide range of interest groups to air their views and tocontribute (Black 1998). Globalisation in this context raises,
however, a difficult question in relation to how to ensure global
views are heard when there are no public discussions or socialgroups in the whole of the African continent (See above). We
need to shift our tunnel vision to a diversified view because theon-going genetic revolution creates cross-border moral crisesthat are intermixed with scientific and non-scientific issues. It
is only fair to re-examine and redefine a common ground forre-conceptualisation of ethical and moral values and theimplications across professionalism and across nationalboundaries (Black 1998).
The requirement of a centralised institution is not apanacea and therefore cannot alone solve complex regulatory
problems. The legal framework needs to be complemented
by other regulatory models if regulation is to work.
The
crucial question is how to begin to implement regulatory
sanctions in liberal society without a big brother surveillancecamera violating the very essence of our rights to privacy.
Regulation in this thesis is seen as a process that goesbeyond traditional efforts by government to regulate theactivities of organisations or individuals and encapsulates
individual self-restraints through self-discipline and public
education and where everyone takes ownership of regulation(Blundell & Robinson 2000). Regulation here looks at how
individuals in their private bedrooms could be prevented fromunreasonable use of their reproductive rights amidst theavailability of a range of eugenic techniques to design thecharacteristics of their babies for cosmetic purposes without
taking into account the interests of potential victims.
Theneed for caution comes from the fact that women today areable to confirm pregnancy within a few minutes in their own
private homes by way of a cheap testing device easily
obtainable from their local pharmacy.
Conclusion
As noted above, subtle pressures may come into play when
opinion surveys are conducted. Viewed from this angle, thebarometer of public attitude surveys is open to possible bias,
distortion and manipulation. When this happens, it raises
questions about the reliability of methods, interpretation andpresentation of survey results.
Whether the result issufficient to serve as ‘public’ is one issue and whether it isdemocratic and representative enough to enforce global
governance is another. The lack of preciseness of opinion
polls is evidenced by the election result in 1970 in which theConservative Party won the British general election contrary to
the numerous opinion polls, which overwhelmingly predictedvictory for the Labour Party (Hodder-Williams 1970). It would

Eubios Journal of Asian and International Bioethics 15 (September 2005)
be misleading indeed naïve, to suggest a regulatory
framework on the basis of a single survey in Africa andManchester alone (however enlightened they might be) without
further deliberation and consultation. That noted, however,
government must pave the way for the views of the public
whether in a democratic or non-democratic system or within
educational setting.
What is clear from the data is the necessity for global
regulation in view of the fact that people would use the new
genetics without knowing much about the risk and without
paying attention to the impact of their decisions on others.
More importantly is the fact that people would use the newdevelopments in human genetics on the basis of theirtraditional, cultural, educational and moral values just as socioeconomic factor may come to have some significant influenceon their choices. Policy makers need to take appropriate
responses to the descriptive data presented here, and alreadygovernments have agreed in principle through their signing
onto international declarations on these issues agreed in
UNESCO.
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Appendix
This questionnaire provided 40 opportunities to makecomments. If every respondent had commented, this would
have amounted to 43,960 comments from a total of 1099
respondents in Africa and Manchester. Given the nature ofthis paper, it was inappropriate, indeed a huge task, to repeat
every comment here, also because many comments were very
similar. However, I have extracted some of the commentsthat reflect (in my view only) a representative message/opinion
from the respondents. The aim here is to provide an overview
flavour of the thinking behind some of the answers given by
the respondents. Where there is no ‘question’ numbers (i.e.
Q) attached to comments, such comments were taken fromthe general comments on the survey.
Some selected comments from respondents (Unedited)
A = Africa; B = Manchester

A493 Q14e Yes; because ‘so as to have the right proportionand sex I want accordingly’Q15a yes ‘so as not to makehim look stupid and irresponsible’ Q15b yes ‘so as not to
spoil her personality in the eyes of other people’A487 Q14e No; ‘because I would like my child to have thenatural colour i.e. mine or his father’s or mixed (both)’.
Q15a &b More likely; ‘baby is still in the womb if possible.
The factor that influenced my decision being that I would
not want to bring forth a child will constitute nuisance orbring problem to him/herself and to myself’
A486 Q15a & b More likely; ‘on rational and moral ground’.
Q16 More likely because of ‘equality of all men’. Q17 Less
likely; because ‘monster may outnumber Angels andhuman race will be in utter confusion’. Q25a No; because ‘I
shall be unique. I am a social animal; though my physicalappearance could be copied, my experience which
determine my behaviour sometimes, cannot be copied, so
what is the big deal about this cloning of a thing?’…‘manmust be very careful with this idea of cloning. It could be
dangerous. Evil men may take greater advantage of thewhole situation’
A485 Q14e Yes; because ‘unequal treatment of blacks
especially outside the black continent’
A479 Q10 Yes; because in most Nigerian culture or in myculture specifically, a couple that does not have a malechild for example, is said to have failed in life because there
will be no male to carry on the family name after the demiseof the father’ Q11a Yes; because I believe the techniques
to be used includes marrying a compatible partner whose
medical history is clear or free from any geneticallytransmitted disease, and also making sure that the
genotype match each other so that the occurrence of asickle cell child would be ruled out’
A464 Q 11d ‘if I design my baby i.e. making him to have good
health, I would be saying that God is not perfect orEubios Journal of Asian and International Bioethics 15 (September 2005)
competent’ Q14e No; ‘a man is not proud of his colour is
not fit to live.
A458 ‘I would want to know more on genetic engineering, you
cam e-mail me at ideleevbu@yahoo.com’
A446 Q14e No; ‘black or white what matters is what is on theinside’ Q15a less likely; ‘he has a right to choose what hewants to be to control himself or subdue urges which arerather absurd’ … ‘yes, I would structure my child inaccordance with my desire but the truth is my religion
forbids it. As much as I desire it my religion will restrict mydecision’A444 Q9 Yes; ‘I choose a boy because I am a man, and hewill be there to inherit my name when I am dead’A442 Q9 Yes; ‘because of the belief that a male child is morecapable to withstand difficulties in life’ Q15b Yes; ‘because
lesbianism in Africa is a social aberration, and cultural
taboo therefore it is improper’M 307 To decrease the chance of a disability would be amarvellous thing if the child would suffer, but to make yourchild definitely heterosexual would eradicate free speechand choice and that is morally wrong in my opinion’
M316 Q15a No; I am homosexual so I would be more
comfortable with a gay child’
A453 Q15a No; ‘I don’t believe homosexuality is geneticallytransmitted. There are other ways of correcting such a vice’
A449 Q15a Yes; ‘my religion and my common sense do notagree with homosexuality and I hate them so I will stop it
immediately if possible because they are abnormal’A445 Q15a&b More likely; ‘because I do not want my child tobe gay’
M300 Q15a, No; They are who they are, sexuality does notmake someone a better or worse person’
M281Q15 yes; Amazing! The world would be a better place
M267 ‘If I have contradicted myself it is because this topic, as
you realise, is terribly complicated but overall I feelengineering of personal physical traits is wrong’
M251Q22 No; how much do they spend on warfare?
M340q22 No; ‘people all over the world live in poverty andthese kind of funds are needed by the poor of the poorest in
our world today’
M326q14a No; surely, IQ is more environment thanhereditary/genetics. There is no quick fix to a better life’
M326q11b No; ‘Who decides what is classified as adegenerative gene? Ginger hair? Homosexuality? These
are choices we should not be allowed to make for future
generations’ As a Quaker, I believe that we should leavesome aspects of our life to providence. I don’t think I haveany moral rights to make the choices you outlined’
M327q20a yes; abortion is not only to help the mother but is a
way of preventing physical and emotional pain in the child’.
Q15a No; what is wrong with being gay? I don’t feel that it
is a bad character trait and that it would affect my child’s
health or ability’ Q14a no intelligence is not everything
creativity and physical ability are just as important’A483 Q20a Yes because ‘I can not be glad having a child thatis likely to die after all I have suffered to bring him/her up’
Q20b Yes ‘having the knowledge of disabled in born baby
is as good as terminating the pregnancy’
M308 I believe medical defaults are a serious concern andcould lead to a poor quality of life’
M345q13 More likely to influence…but I would not but myculture favours ‘perfect babies’
M349 ‘Genetic engineering would distort the human race
beyond recognition’M 355 ‘parents should love their children whatever they arelike and so should not want to change them’. Q11b No;‘because God designed us to be different – if we all161

designed our children they would be likely to be very
similar-not as God intended, in my opinion’
M358q20a Undecided. Very hard to know how you would
react to such a situation until you are actually faced with it.
Would like to take moral high ground and to say no but inreality do not know how I would react’
A475 ‘If adequate resources are provided for the realisation of
the aim of genetic engineering, I think to a great extent
human disorder and abnormalities will be greatly reduced’
M359q19 play with nature…nature has a way selection for areason – tampering with this may cause problems’
M362q7b Yes; I think it will happen regardless whether it islegal or not’
M365q20a More likely…depending on the type of problem’
M370 ‘The whole thing seems far too unnatural to me’
M373q14b More likely to do so …‘for the simple reason that if
everybody else was doing it, then your child with lower IQ is
at a distinct disadvantage when it comes to competition forwell paid jobs etc. and thus a higher standard of living’M376q20a Undecided… ‘Very hard question to answer without
being in the situation’M37814b Yes, it would be difficult for the child if they were far
behind due to a lower IQ’. Q16 No… ‘it is more valuable toovercome our initial thoughts and feelings, makes you abetter person’
A461 ‘Why should we go all the way to think about improving
our genes when it is obvious that we were all created in theimage and likeness of God. So we are perfect in his own
way. Genes should be left the way they are even if deathappears in the picture God knows all’M375 ‘Very interesting and also very worrying. I hope I am notaround to see a world full of clones’A460 ‘I feel really sad about this cloning issue, I think it is anevil thing which should be prohibited’M341q25a Yes, I am twin
A471.‘First people should understand that genetic engineering
is science i.e. man-made and is bound to malfunction or failso in the process of that what happens when this thing
fails?’

Emergency Management in
Public Health Ethics: Triage,
Epidemics, Biomedical
Terror and Warfare- Hans-Martin Sass, Ph.D.
Zentrum Medizinische Ethik, Ruhr Universitaet
Postfach 102148, D-44780, Bochum, GERMANY
Email: sasshm@aol.com, sassh@georgetown.edu

You govern a kingdom by normal rules; you fight a war by
exceptional moves; but you win the world by letting alone(Tao Teh Ching, no 57)
1. Normal and Extraordinary Situations
Life has normal and abnormal times; this is true forindividuals, families, and also communities and states. Thereare certain technical and moral norms which guide our
behavior, make us successful and reliable in everyday life andin professional life. These guides govern our behavior and the
expectations of others. The rule ‘love you neighbor’, known as
the golden rule in all cultures. We define good people incontrast to bad people as to be those who act of an attitude of162

Eubios Journal of Asian and International Bioethics 15 (September 2005)

compassion, who care for others, in particular for those whoare close to them: parents, family, neighborhood, but not
excluding strangers. The concept of compassion is valid foreveryone, for personal and for professional activities.
Businessmen should not exploit or steal or otherwise hurt theircustomers. Generals have to fight the enemy, not their own
government or the people of their country; homebuilders haveto build stable and reliable houses. The medical profession,
physicians and nurses, have their own code of ethics, moreclearly defined in medical ethics: a great physician has tocombine expertise and ethics, professional knowledge andhuman compassion. He should not make difference between
his patients and treat everyone fairly and just; he should treat
everyone professionally and morally as if he were his own
father or mother. As famous Confucian doctor Sun Smiao in
his book ‘On the Absolute Sincerity of Great Physicians’ wrote:‘A Great Physician should not pay attention to status, wealth orage; neither should he question whether the particular person
is attractive or unattractive, whether he is an enemy or fried,
whether he is a Chinese or a foreigner, or finally, whether he isuneducated or educated. He should meet everyone on equal
grounds. He should always act as if he were thinking of his
close relatives. (Sun Simiao: On the Absolute Sincerity ofGreat Physicians). In the Western world Hippocrates, who iscalled the father of Western medicine, expressed the same
ethics by means of an oath to be sworn by physicians: ‘Into
whatever houses I go, I will do so only for the benefit of thesick, avoiding all willful injustice and harm’.
In modern times, we have certain requirements for the
ethics of a good physician. These requirements are based in
the tradition, are taught in medical ethics classes, but above allby role model and behavior of clinicians, doctors and nurses
who are exemplary teachers of their students and rightly called
masters of the arts and sciences of healing, i.e. combining
expertise and ethics, professionalism and compassion. The
requirements for a trust-based communication and cooperation
with the patient and the family include the following norms andstandards: (1) the care for the individual patient who is yourfirst obligation; only thereafter come obligations to the family,
the hospital, society; (2) every intervention requires theinformation and the consent of the patient [or his family] out of
respect for the dignity of individual values and personal choice;(3) do not treat without informed consent; (4) treat everyone
fair and equal, e.g. do not make a difference between the poorand the rich, men or women, or people of so-called social
worth such as public officials or dignitaries; (5) treat those whoneed the help most, first. It is the usual practice thatemergency care is given priority over routine treatment in
hospital wards; doctors are called to the emergency room andother patients and non-emergency procedures have to wait.
2. Triage In Disaster, Catastrophe and in War
The case: A bus accident has happened on the road. All 30
people are hurt, some very severely and might die if nothelped immediately; among the passengers is a nurse who
could help, but she is also hurt. A local ambulance with one
doctor and two nurses with some emergency equipment
happen to come by. The doctor recognizes his mother to beamong the more severely hurt. How would you set priorities, if
you were the physician, would you treat your mother first, or
those who might die if not helped immediately? Would you
give the nurse a priority treatment in order to get one moretrained nurse to help?
The bus accident case presents a situation of triage. Triage
occurs in natural or man-made catastrophes, in severe
epidemics or endemics, after acts of terrorism and in war.
There are established rules of professional conduct and ethicsof triage; for medical as well as ethical reasons these rules aredifferent. The general rule is: safe as many lives as possible inthe shortest possible time or in the time available. Such a
triage ethics is reverse to what is professionally and ethicallymandated in normal situations. Triage ethics include: (1) give
preferential care to of medical or management worth, who can
assist you; (2) care for those first, who are least hurt; (3) allow
those, who are hurt most, to die; (4) provide treatment, if
necessary, without consent.
Of course, there will be a professional and very personal
conflict for the doctor in postponing the treatment of his own
mother, actually putting her into the sequence of a treatment
list, which contains the easiest cases first and the mostcomplicated cases last, i.e. violating the principle of ‘filial love
[xiao] for the benefit of ‘neighborly and patriotic love’ [zhong].
The ethical reasoning give for the triage situation is thereverse commitment of the physician and the health caresystem to safe life: save as many lives as possible and don't
safe those lives, which need it most. Giving the nurse apreferential treatment contradicts the principle of fair and justhealth care directly, but it helps indirectly to increase thequantity of care given to everyone on the list of a sliding scale
people needing less help and more help and very much help.
NATO instruction in a handbook on ‘Emergency War
Surgery’[www.vhn.org/
Ewsurg/ch12/12Triage.html]
differentiates between ordinary and extraordinary triage:‘Ordinary triage classifies the wounded so all will receive
optimum care, while mass casualty triage treats the injured
according to salvage value when the injured overwhelm
available medical facilities and not all can be treated’. In
making triage decisions, pressure of time to treat certain cases
earlier than others complicates medical and ethical decisions
even further. In traditional virtue theory, this would mean that‘neighborly and patriotic love [zhong] in those extreme
situations becomes a more urgent virtue that ‘filial love’ [xiao]
and that ‘colleagues’ as potential partners become preferential
treatment.
3. Fighting Epidemics
Case Study: Two dozen family members and friends attend
the marriage of Mr. and Mrs. Wang. They come from different
provinces, some even from abroad. During the festivities they
got infected with a highly lethal virus, such as the SARS virus,
Ebola or a pathogen similar to the H5N1 virus. Twenty die;
only four survive. By using high-tech and low-tech modes oftransportation, they spread this highly contagious virus aroundmany provinces and around the globe, causing one billion
people to die. The case of the Wang family spreading a highly
lethal virus around the globe results from the easiness, safety,
and affordability of global travel. Global travel is a highachievement made possible by a combination of high-techdevelopments in hardware and software and skilled
businesses and good governance; it is definitely a contribution
to global enterprise, communication and cooperation, not atleast to better understanding each other. But global travel canspread dangerous viruses and other dangerous material moreeasily around the globe than before. Countries are fixed totheir respective geographic place, people, viruses, materials
are not. Two different scenarios describe the destructive
potentials of the high-tech context for human health, human
life, and human culture: (1) the ‘natural’ spread of global
diseases, and (2) the terrorist, aggressive, or criminal use ofpathogens to kill or to terrorize. For scenarios, ordinary
citizens and public officials may (3) translate classical theoriesof ‘just war’ into the high-tech context of biomedical terror andwarfare.
(1) Global mobility causes global spread of infectious
diseases: We don’t have to wait for terrorists, criminals or
foreign countries to use biomedical devices for killing, terror orEubios Journal of Asian and International Bioethics 15 (September 2005)
warfare. High-mobility of people, made possible by integrated
global travel, and global networks of trade and commerce
make the spreading infectious diseases easy and dangerous.
To fight these side-effects of the high-tech context of themodern globalized world, high-tech interventions arenecessary. First among those high-tech defenses are (a) ahigh-tech research capacity, including the education andcontinuing education of epidemiologists and other experts, (b)a high-tech infrastructure of informing and communicating withexperts and, even more important with citizens. Of particularimportance is the full, clear and easy to understandinformation and advice to all citizens about the dangers, about
self-protection, and about shelters or facilities for help. If fulland easy to understand information is not given, then publicauthorities will loose trust and people might not follow advice
and instructions. Of secondary nature, but unavoidable andprobably less effective if not supported by well informed andtrusting citizens is the control of travel.
To prevent the spread of the disease, ways of spreading
have to be blocked rigorously; this might include the total stopof mobility for people and some merchandise. Of course, a few
or many civil and human rights will have to be restricted.
Following the minimax principle, such restrictions on travel andmobility need to be balanced against the lethal and contagious
character of a particular disease and the extent of such atemporary restraint needs to be communicated fully andopenly. Also, the establishment of an independent governanceand monitoring committee would be highly advised for two
purposes: to control actual restrictions and make those whoare in control aware that they are monitored, and to keep andpreserve the trust of the people, who suffer under those
restrictions, and later report in public on their findings.
Unfortunate, as these destructive side-effects of a high-techworld and highly mobile people are, they are just a side-effect,
not a dilemma which would call to reduce global travel andmobility. People and viruses can travel geographically,
countries cannot; therefore countries are obligated to restrict
the movements of people and viruses. This includes
unfortunate actions such as quarantine facilities, mandatory
inoculation, restriction of movements, and other burdens on
individual lives and lifestyles.
4. Public Health Ethics and Acts of Terror and War
Here is a slightly different case: Not the nice people of theWang family, but a handful of neurotic or fundamentalist
extremists, ready to commit terror and killing via their own
suicide deliberately infect themselves with a highly contagious
and lethal virus. They ‘distribute’ the deadly virus notaccidentally as the Wang people did, but deliberately. They
strategically infect many other people who then will infectmany more on a global scale: in buses or subways leading toairports, in movie theaters or sports events, in planes andtrains. Many pathogens in military or research arsenals or new
strains of pathogens or deliberately modified and even more
deadly strains can be used for that purpose. Biomedical
terrorism and biomedical killing is a side-effect of the modern
world of global integration; it is also a criminal act of highest
danger which needs to be dealt with accordingly. The alreadymentioned instruments of high level of research, readiness totest, to inform, to advise and to react by immunization,
restriction of mobility, and quarantine need to be used for theprotection of innocent citizens and of humankind. But levels of
uncertainty and risk are higher than in naturally occurring
situations of medical triage or endemic infection catastrophes,
because of the deliberate strategic destructive powers of evildoers. There is a variety of scenarios of modern high-techbiomedical destruction, terror, and war: Evil-doers might work
alone or with a few friends, might have support networks, get163

help or encouragement even from governments, orgovernments themselves might use biomedical warfare.
(a) In cases of biomedical terrorism, only a few might bekilled because of poor planning by terrorists or swift reaction
by public authorities. As one purpose of terrorism is killing andthe other purpose to terrorize the survivors and to breed scareand fear, it is very important that authorities and experts givethe lay citizen all necessary information of how to protect
herself or himself and how the pathogen lives and becomes
distributed; only then will the citizen feel some sort of powerover the terrorist, the attack, the terror and the angst and fear.(b) When and if terrorists work alone in small cells, the best
defense and prevention against all forms terrorism and radical
discontent in society is to support healthy cultural and ethicalenvironments, inform and educate the people to be risk
competent and vigilant and responsible citizens. Global hightech networks of communication and travel allow good-doers
as well as evil-doers to work successfully in reaching theirgoals. We may call the situation a dilemma; being strongly insupport of technology as a tool to cultivate raw nature anduncivilized societies, I rather call it a side-effect we need to beaware of and protect ourselves against.(c) Terrorists most likely will have direct or indirect support
from international groups, even from governments, alike thesea pirates always had. If this is the case, then those groups
and governments need to share the blame and punishment
and be exposed publicly.(d) If biomedical killing is one of the options seriously
contemplated by governments, the best defense against thosedangerous weapon for killing masses of innocent people are ahigh level of research and preparedness and, unfortunately, a
policy of threatening to retaliate similarly. During the times of
the Cold War this was called the strategy of ‘mutual assured
destruction (MAD). The acronym MAD, when not read asacronym, means mad, irate, imprudent, senseless, i.e. it
makes the calculation to win for a potential aggressor too
uncertain and also the probability of loosing one’s own
population and power. For an intellectual and academic
ethicist without real responsibility and power in thosesituations, it is futile and irresponsible to even evaluate thearguments pro and contra in analytical and ethical terminology;
it will be the very personal responsibility of those in public
office to make such decisions, which are beyond humancapacities to calculate, and to live with those decisions for the
rest of her life and in history.
(e) It has been mentioned that protection of certain hightech biomedical research from patenting and public knowledge
would be necessary to curb dual-use or abuse of knowledge
for terrorism or other immoral use, in particular methods used
to modify microbes to make them resistant to drugs [Kaiser2005]. As secrecy this might be a means to slow the
distribution of knowledge, centuries of technology development
have shown that firewalls against double-use or spin-off rarely
work in the long run. But certain principles of governance toprevent potential abuse of biomedical knowledge definitely is
warranted, also in scientific publication and patenting. Bu then,potential terrorists and mass killers do not need to develop
their own, potentially more deadly biomedical weapons, as thearsenals of biomedical research are full of deadly pathogens.
Also, pathogens such as dangerous forms of flu or otherviruses will develop naturally and evildoers, in particularsuicidal killers, will find ways to infect themselves and infect as
many people as possible before they might die.
5. Does Crisis Ethics Justify Exceptional Ethical Moves?
Is the fight against biomedical terrorists and killers of any
kind a war and thus allows using methods and means, which
are ethically accepted in wartime? Furthermore: does the164

Eubios Journal of Asian and International Bioethics 15 (September 2005)

same apply to situations of emergency caused by natural
disasters or man-made catastrophes? Is the possible
destruction of large numbers of people and culture so eminent,that extraordinary means are justified? European military
theory and ethics, similar to Chinese military theory and ethics,
has as set of principles which need to be recognized to fight ajust war. There are five requirements to justify a war as ameans of last resort: use of power must legitimate; it must be ajust cause; it must have the right intentions; it must the meanof last resort; it must be an obligation (potestas legitima, causa
justa, recto intention, ultima ratio, modus debitus).
(1) The person or institution using power must be
legitimate. This definitely was and is the case for elected
government which has the obligation to protect its people. But
in modern times, particularly in the high-tech context,
professional organizations such as those of engineers,
physicians, internet experts have a legitimate power to advise
governments and to be partners or executors of powers in theprotection of the people. People who would be high value
because of their skills, would get preferential treatment,
because they will be valuable assets to fight epidemics orsituations of triage. Not only generals and high public officials
are essential assets in fighting catastrophes, whether natural
or man-made. Actually nurses or doctors are of higher
immediate value than high bureaucrats who do not bring any
special skill to situations of triage and great danger to a highnumber of people.
(2) The cause must be just, i.e. it must serve the purpose ofprotecting innocent people and the population for which thegovernment is responsible, in modern times even responsible
for the survival and health of the global population. In the caseof biomedical destruction, but causes would justify the exerciseof warlike powers. It is under discussion, whether or notpreventive war is justified as the fight against microbes, once
spread, is extremely difficult in biomedical and epidemiologicalterms, but also in terms of protecting civil and human rights.
Saving people’s life always has been and always must be thehighest order of every compassionate and civilized person,
especially of physicians and health care expert and of highpublic officials.
(3) The use of war or warlike powers has to come from theright intentions, i.e. the argument that one wants to protect thepeople must be serious; it would unethical and unjust to usethat argument only to build a stronger power base for oneself.
A means to check this requirement is to check whether themeans used, are precisely appropriate for the purpose.
Temporary restrictions of civil liberties never are allowed forthe purpose of gaining more power or hurting other parties or
persons in the process of politics and business, or forenriching oneself.
(4) War and warlike situations need to be the means of lastresort, after all other means to protect the health and life of thepeople have been exhausted. In combination with otherprinciples such as highest levels of information, civil ethics andpublic preparedness, citizens will understand and support themeasures taken on their behalf. Restriction of civil liberties,
such as quarantine and treatment or immunization against aperson’s will, must only be used as means of last resort. Other
public health activities such as information campaigns
requiring mandatory attendance are of lower impact on civil
liberties.
(5) Finally, the exercise of warlike power needs to an
obligation, a duty of those who resort to these interventions
and acts as a last resort. For public officials the highest duty is
the protection of the people, their lives and livelihood; this is acommon-sense duty, but also supported by all religions, andby Confucian and socialist reasoning. It is important thateverything be done to avoid situations of high emergency anddanger to high numbers of people, i.e. prevention ofcatastrophes by means of vigilance, safety regulations,education of experts and people, and quick responses, whichmight keep the proportions of disasters as small as possible.
Thus, natural and man-made disasters do, indeed, justify
using the model of just war under the condition, that these fivespecific requirements are met. It would be advisable that
ethicists and strategists in public office and in professionalorganizations develop more detailed lists of principles formonitoring the exceptional powers given to or taken by those
who act in warlike situations in the high-tech context.
A personal word: It is extremely unpleasant anduncomfortable for an ethicist to argue in favor of restricting civilrights and liberties and in favor of abandoning people inseverely pain and suffering and helping those who are lesssick or hurt. My moral and intellectual background comes fromchildhood experiences of the 2nd World War in Europe and thestudent and intellectual revolution of 1968. I have seen someof the immoralities and atrocities associated with times of war
and after-war. I also cherish the civil rights of free and open
modern societies. I hate war and I hate everyone who takes
away civil rights from people without an extremely strong andpersuasive justification. However, the dangers of high-techbiomedical attacks and destruction are so threatening, that I
strongly feel that the just war theory and ethics must be
employed in evaluating and in guiding the situation those
responsible in public office, experts in their specific fields, andabove all educated and responsible citizens find themselves in
the context of high-tech biomedical risks and options.
Unfortunately, it cannot be excluded that sooner or later anatural disaster such as a new bird virus or any otherpathogen might develop to which humankind is not immune. In
the global situation of high mobility of merchandise andpeople, such a contagious pathogen can spread rapidly
around the globe, not only within one country, and cause
hundred of millions, of not billions, of fellow humans to die.
6. Prevention and Preparedness is Essential in Public
HealthThere are a number of medical and ethical issues which
need to be discussed in detail as means of prevention andpreparedness. Traditional measures in public health alreadyhave caused controversy among bioethicists and suspicion incertain populations. Polio vaccination in Nigeria has met
resistance by strong forces in traditional culture and wasintroduced by poor government education programs. But
vaccination programs as a means of prevention for diphtheria,
tetanus, whooping cough, meningitis, flu, measles, mumps,
rubella, hepatitis A, and influenza are either mandatory forcertain risk groups or offered to highly vulnerable people.
Immunization is a service to the individual as well as to thecommunity. Education in how to prevent the spread of diseaseor to reduce the risk of occupational or lifestyle related
accidents also are important features in the protection ofhealth for the individual as well as the community.
Preparedness for biomedicial disasters of mass proportions
includes not only training of health care professionals;
cooperation with other local experts and public authorities isessential. Material has to be pre-positioned, facilities otherthan hospitals have to be determined as shelters or forquarantine. Health care workers and other disaster relief
personnel have to immunized preventively, if and when aspecific bacterial or viral pathogen infection or attack cannot
be excluded. Such immunization programs are costly and also
might have side-effects on the health of those immunized.
Ethical and professional issues associated with mandatory
preventive immunization programs need to be addressed prior
to immunization. Some health care workers will be quarantinedEubios Journal of Asian and International Bioethics 15 (September 2005)
together with patients; those who for a variety of personal orfamily reasons rather should or would not be quarantined need
to be identified long before and formal quality criteria for
selection need to be developed and publicly and professionallydiscussed prior to implementation.
Prevention, whenever and wherever possible, is importantto reduce dangers, once they cannot be avoided or averted.
Prevention methods include immunization programs,
education of citizens to be vigilant and alert, to follow safety
recommendations and instructions. Another means to reduce
the severity of a catastrophe is appropriate training andrehearsal, in particular, when many parties on the local levelare involved. The chain of command needs to be establishedin such realistic training programs. Also material needs to beready and pre-positioned, so that it is readily available where itis needed.
Additional to natural catastrophes, the same measures of
prevention and preparedness need to be applied to thepossibility of man-made disasters, those by accident and inparticular those caused intentionally. Given the immoral andcriminal intentions of a few determined criminals to kill
innocent civilians, it also cannot be excluded that they will findneurotic or criminal expert to help them to specifically engineer
deadly pathogens just for the purpose of killing fellow humans.
It has been discussed to, in particular, to limit information andscientific publication on molecular research knowledge ofmanipulating pathogens, as such knowledge can be used bycriminals to construct even more deadly viruses or bacteria.
While the dissemination of knowledge rarely can besuppressed for longer periods of time, patents cannot be
granted and further research will be hampered, including
research on developing vaccines and antibodies for rapidlychanging pathogens, as the recent H5N1 flu virus seems tobe.
As disaster management is service to the people under
extraordinary circumstances, public officials and health careproviders need to prepare themselves during normal times for
extraordinary times. Therefore rehearsals and planning andimplementation exercises are extremely important. It isessential to determine the chain of command, to have morethan one means of communication, to preposition materials
and goods, also to include the private market sector.
Bioethicists Childress, Kipnis and Moreno speak about a‘publicly accountable system’ in which the public trust and theprotection of the community are of highest priority; Kipnis
outlines a ‘decentrlized system of health care delivery undercatastrophic conditions, health care without hospitals’ [Moreno
2004:xxi, 95ff].
Private market businesses such as supermarkets,
hardware stores, hotels offer special routine service to thepeople; they are profit oriented and have experience to change
services and goods depending on demand. The profit
motivation and the skills of private business should not be
underestimated in contributing to manage big and unexpectedcrises and disasters. In particular, when natural disasters canbe foreseen, private business will preposition goods andservices and might be quicker in a response to masscalamities, as has been shown in relief efforts for hurricane
victims. It would be prudent for public officials in control ofdisaster relief to not also micro-manage the private sector,
rather encourage the private sector to cooperate in relief
efforts, whenever possible. The Daoist saying ‘you win theworld by letting alone’ can be translated for government
officials into the emergency situation when not everything canbe done by public officials and actually should not be done bypublic officials and response teams. There is a certain
prudence in competitive market forces, where people know
their skills and are compassionate, that they as citizens and as165

professionals will help where they feel help is needed and canbe provided by them. Thus, the encouragement of civil ethics,
i.e. the ethics of citizenship and neighborly love, is one of themost important tasks of public officials and of public discourseand culture.
7. Hard Cases in Public Health and in Great Danger
There are some ‘hard cases’ which had been discussed in
the bioethics literature and unfortunately are occurring again
and again. I mention just three: (1) Investigational torture ofterrorists in order to gain information which could savehundreds, thousands or millions from attack and death; (2)killing out of compassion and mercy; (3) saving the life of an
enemy in situations of limited resources.
(1) Investigational torture. The case: A terrorist wascaptured who very likely has information on the whereaboutsof other members of his team, his superiors and of plans ofimmanent attacks on I high number of people. The captors ask
you to assist and consult as medical expert in proceedings of
torture as a means of last resort to save very many innocent
people in immediate danger. What would you do? Possible
benefits are evident and include the saving of highest numbersof innocent people, work as a disincentive for potential
criminals and could lead to capture of other criminals. The
World Medical Organization in 1982, and again in 2004,
passed a resolution that ‘medical ethics during armed conflict
are identical to those in peacetime’.
(2) Mercy-killing. The case: After a car accident, a triage
situation develops and the most severely hurt cannot betreated; they scream in extreme pain and agony; some ask to
be killed. They know and everyone else knows that theycannot be saved and that all of them will die a painful death.
Would you active kill those who plea for that, would you also
kill the others who are in similar agony but only scream?
Situations like this have been reported from the battlefields ofthe past when wounded soldiers were screaming between
enemy lines with no hope to salvage them. In some cases,
their soldier friends shot them, in other cases they listened tothe screams of their comrades for hours and hours. Mercykilling is an issue which does not occur only in warlike
situations; it is an everyday issue in treating terminal patients
who are in pain and suffering. Professional codes of conduct inWestern as well as in Chinese medicine refuse vehemently theactive killing of a fellow human as contrary to the rules of
ethics and nature, and the obligations of physicians; but there
are situations where compassionate health care professionals
and family members have resorted to killing patients or their
loved ones out of mercy and compassion.
(3) Costly health care for an enemy. The case: UnitedStates Special Forces capture a combatant in Eastern
Afghanistan, only to find out that he needs dialysis treatment.
The prisoner refuses the treatment, saying he would rather bedead than in the hands of the enemy. Doctors are reluctant totreat without informed consent. Two days later, the US
Secretary of Defense orders dialysis treatment, arguing thatthe prisoner might have valuable information on other terrorists
and on planned attacks. What would you have done? [Zupan
et al 2004] The Geneva Convention on treating prisoners of
war requires equal and fair treatment to all, prohibits medical
experiments on prisoners if those are against the prisoner’sinterests, and requests informed consent.
There are more than these three cases to which an answer
is not easily found and in regard to which bioethicists, healthcare professionals, public officials, and each and everyone ofus might have different opinions. Research literature inbioethics documents and reflects these different opinions.
Hard cases rarely can be solved in the classroom and should
not be solved in the classroom by giving instructions, such as166

Eubios Journal of Asian and International Bioethics 15 (September 2005)

you would give instruction in a cookbook or for standard
treatment in medical care following quality norms. These arecases of a very personal matter where ethical and medical
analysis is not enough to make decisions or to criticize
decisions. The moral agent to make those decisions, beyond
the capability of moral calculation, is the person in the actual
situation. Only in an actual situation, the interaction andcombination of expertise and ethics can be the final test for
professional and compassionate behavior based in personal
responsibility. Decisions might be right or might be wrong; one
might regret to have made a certain decision at a later date.
One might regret not to have involved oneself in interrogational
torture because it became evident that 1000 lives could havesaved, if one had not refused.
8. Disaster Ethics Is Partnership Ethics: Serve the People
Reviewing extraordinary situations of challenge tophysician’s and health care expert’s professionalism andcompassion and addressing hard cases, for which there is noclear-cut answer, points to the different roles and obligations
and duties for health care professionals: Some in the field of
public health, some in consulting or treating the individual
patient, some in consulting on prevention, some inaccompanying and comforting the frail and dement, some inconsulting public officials, some in being elected to a public
office based on skills and knowledge as an expert in the carefor health. High-tech cultures depend essentially on skills andcompassion of experts, individual citizens and communities.
Physicians and other health care workers play many roles inmodern society: treating patients in acute and in chronic
situations, consulting and advising citizens in regard tolifestyle, nutrition, occupational and environmental health,researching and improving family and clinical medicine andepidemiology, advising government and corporations in regard
to safety and reduction of risk to health, preparing, advisingand cooperating in the management of natural disaster,endemics, biomedical terror and warfare. Dr. Research, Dr.
Acute, Dr Consult, Dr Care, Dr. Manage, Dr Prepare, Dr
Govern, Dr Teach, Dr Partner, Dr Special, Dr Example, they all
display special skills in their craft. But all these different skills
need to be developed and cultivated in the tradition of thegood doctor, who according to Confucian physician Yang
Chuan (300AD) defined a set of interactive professional virtues
for the physician, who combine skills [ji] with compassion [ren],
who are clever and wise, sincere and honest.
Whether treating patients in the family medicine or in hightech medicine, in disasters, endemics, or in war, physiciansneed to cooperate with others, with people who organize
emergency logistics, who understand radiation, pathogens orearthquakes, who can coordinate and manage. But above all,it will depend on the compassion and team spirit, all thesepeople bring together with their skills. Real situations aredifferent from simulated situations. But anticipatory simulationand preparedness allows for better managing extreme
situations. Discussing the extreme challenges of crisis ethics,
triage, endemics, and biomedical terror and warfare in theclassroom or in preparation meetings results not in a protocolthat produces moral solutions, but those discussions andactions ‘enhance awareness of the many moral aspects of thedaily practice in which professionals operate’. What theclassroom discussion in medical ethics, in public health ethics
and in the ethics of emergency care cannot do, is to prescribe
a list of ‘to do’ and ‘do not’. But case studies and analyticalevaluation of medical and moral options can help to develop
what has been called ‘moral competence’: ‘the ability to see
what is morally relevant in a situation, knowing the points ofview from which one sees it, understanding that others may
see it differently, and then, with others, responding well towhat one sees’ [Verkerk 2004:37]. Classroom teaching iseasy; life is not easy; making ethical decisions in exceptionalsituations is not easy. Easy to understand is the obligation tosafe life, to alleviate pain and to professionally consult inmatters of a healthy lifestyle and the enhancement of life;
difficult is the implementation of all of this.
Extreme situations require extreme, sometimes very
unpleasant and very extraordinary means of protecting
individual lives, families, neighborhoods and communities.
Those extraordinary means need to be guided by principle andprudence, strategically coordinated, and executed with skill
and compassion. Preparedness pays off as it reduces
calamities and makes the community stronger; also surviving
disasters makes individuals, communities, institutions andcorporations stronger.

[A lecture delivered in October 2005 at Peking Union Medical
College and Tsinghua University, Beijing]
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Enhancing Reflection. An interpersonal exercice in ethics
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Plan has Big Payoff. Wall Street Journal, Sept 12:B1-3
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Eubios Journal of Asian and International Bioethics 15 (September 2005)

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The goals of EJAIB include:
1. EJAIB is the official journal of the Asian
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Bioethics Program.
2. To review and update news and trends inbioethics from around the world. Bioethics is
broadly defined as life ethics, including both
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ethics,andenvironmental, ethical, legal and social issues
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167

EJAIB Editor: Darryl Macer
Associate Editors
Jayapaul Azariah (All India Bioethics Association,
India),
Masahiro Morioka (Osaka Prefectural University,
Japan).
Managing Editor: Nobuko Yasuhara Macer
Editorial Assistants: Naoko Kimura, Catherine
van Zeeland
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Zealand), Pinit Ratanakul (Thailand), Qiu Ren
Zong (China), Hyakudai Sakamoto (Japan), Sangyong Song (Korea); Noritoshi Tanida (Japan), A.K.
Tharien (India), Yanguang Wang (China), Daniel
Wikler (USA), Michael Yesley (USA), Jeong Ro
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