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Challenges to public engagement in science and technology in Japan:
experiences in the HapMap Project
EIKO SUDA, DARRYL MACER & ICHIRO MATSUDA 1
Abstract
Public engagement in science and technology has grown in importance as
developments in science and technology make increasingly significant impacts on
people’s lives. Now, efforts to engage publics in social decision-making or consensusbuilding regarding science and technology involve participation, learning ordeliberation opportunities, as well as interactive or coproductive efforts among
various sectors in society based on the recognition of scientific activities as a part ofsocial operations - even those performed by scientific communities. We haveconducted a community engagement program in the HapMap project, theinternational human genome program, in Japan since 2002. Consequent upon our
various approaches to engage Japanese publics, a range of observations were made,such as that: public engagement is not yet recognized or institutionalized in Japan;
there is a wide gap between science and society; and the implications of public
engagement in a Japanese context have not been examined enthusiastically, especiallyfrom the perspectives of political decision making, social consensus-building or selfdetermination. In this paper, we provide an overview of public engagement in Japan,
and discuss issues and challenges raised by the HapMap community engagement
project. We also discuss the implications of public engagement for social decisionmaking and self-determination, and explore the prospects for public engagement inscience and technology in Japan.
Introduction
Background: public engagement in Japan
There have been attempts to engage the public regarding particular applications ofscience and technology in Japan since the early efforts to gain acceptance of nuclear
energy production. What could be called public engagement (PE) has been attemptedin various spheres, including the development of technology assessment (TA),progress in regulatory sciences, risk communication, advancement of ethical, legal
and social implications (ELSI) studies, since the 1970s. However, PE approaches
have remained limited in scope and consequently they have still not taken permanentroot in science and technology fields in Japan. 2 In contrast to many advanced
countries where TA is operated continuously under established frameworks with_____________
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systematic evaluation methodologies, there is no permanent framework for TA in
Japan yet. 3 Institutionalization of PE in scientific research or technology development
is an important need.

The Human Genome Project of the 1990s 4 was a significant catalyst for ELSI studies
in many countries. While significant resources are allocated to science and technology
in Japan, less than 1 per cent of the total human genome research budget has beenspent on ELSI purposes so far, despite this point having been discussed
internationally since 1992. 5 The recent reforms by which national universities became
independent administrative entities in 2004 have not helped, as universities areinterested in promoting research investment with short-term achievements or benefits,
so that ELSI studies tend to be disadvantaged. 6

While the slogan a “nation based on the creativity of science and technology” hasbeen advocated as national policy for long time in Japan, the white paper on scienceand technology published in 2004 7 highlighted the concern that science andtechnology are held in low regard by lay people, and repeated the call for improved
science literacy among the public. The white paper introduced the concept of PE in
science and technology as a strategy to promote more interactive communication
between science and society rather than following the dominant top-down styles.
Scientific communication was encouraged as a part of scientific policy to improvescience literacy in society generally. However there is still little research on theobjectives, roles and functions of PE, nor on the appropriate methodologies andevaluation methods in Japan.

Currently in Japan the public at large, including sectors such as government andindustry, and scientific communities as well as lay people, understand PE as a strategy
for the development of public acceptance of science and technology. This is close to a
deficit model concept of public understanding of science (PUS) rather than positive
PE as seen in recent modern movements. Simply, it may be viewed as an extension of
public relations, rather in the way that the concept of ELSI is often recognized only inthe context of obtaining informed consent.

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The International Haplotype Mapping Project
The International Haplotype Mapping (HapMap) Project 8 is an international
collaborative project to determine the common patterns of DNA sequence variation
across the human genome by genotyping four populations in the world including
persons of Japanese, Han Chinese, Northern and Western European and Yoruban
ancestry. 9 The project was initiated in October 2002 by the International HapMap
Consortium, which consisted of organizations and institutions in five countries: USA,
Japan, United Kingdom, Canada and China. It mapped the regions of the genome
inherited over the generations (haplotype blocks represented by the set of single
nucleotide polymorphisms (SNPs)).
This project is positioned as post-Human Genome Project and its products have beenenthusiastically expected to empower progress in life science research in the “postgenome age”. The database, including the developed HapMap and the cell bank ofcollected samples which was created in Coriell Cell Repositories, 10 has been madefreely available in the public domain to be utilized for life science research byresearchers across the world.

The project set out to identify human haplotypes, the patterns of common variation in
DNA sequences across the world human population, and to develop a haplotype map,by genotyping four populations (see above). Even though the project based the
HapMap on human beings in general rather than particular groups, 11 much genetic
information regarding the populations under study might become apparent through theprocess of developing the map and its utilization, since the map is freely accessible toanyone in the world. Also, the samples collected for the project are stored in thecentral cell bank permanently and have already been made available for researchers.
Therefore, the impact on those participating - both as individuals and as communities- needed to be considered, not only before but also after the project. A community
engagement and sample-collection group was organized in every participating
community to work out the best process to respect each community’s social, culturalor historical background. 12 The mission of the group work was to provide information
about the HapMap Project, including scientific background, ELSI issues regarding
such research, risks and benefits of participating in the project, both for individuals
and the community, and to collect the responses, questions, concerns or opinions fromthe community. Also, based on the knowledge from the community engagement
process, the groups developed culturally appropriate protocol modifications forsample collection, including the informed consent process, sample management, and_____________
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privacy protection in each community. 13 The research described below was conducted
as part of the Japanese community engagement/public consultation work of thesample-collection group of which the authors were members.
Community engagement in the HapMap project
Location
When we refer to race or ethnic group, various factors including historical,
geographical, linguistic and cultural background should be considered, rather than
only biological or genetic ones. Japanese residents comprise a mixture of populations
with various geographical backgrounds and ancestries including indigenous people
and persons of other Asian ancestries. Therefore it was not easy to define the criteria
for “Japanese” even for scientific purposes. This is one of the critical topics thatshould be considered carefully in any country, even in one often perceived to be morehomogenous than countries with greater ethnic diversity.
In Japan there are about 128 million residents (127,694,000, Oct. 1, 2003), and almost
one tenth, more than 12 million, live in the Metropolis of Tokyo. 14 Considering that
the Metropolis of Tokyo developed as “Edo” town in 1603, that it is relatively new
historically, and that major population growth has occurred in the past 150 years since
the Meiji era, the current residents could be viewed as reflecting the mixed populationof Japan more than anywhere else in the country. Also, since it is a big city, thepopulation of Tokyo might be expected to include persons of various different social
backgrounds and to reflect the attitudes of many social groups existing in Japan.
Based on such considerations, the area around the Metropolis of Tokyo was thought
to be an appropriate project site for the HapMap project.

Target groups
The HapMap project used the term “community engagement”, as has been popularly
used in the USA over the past decade. The HapMap community engagement project
for Japan was conducted from early 2003 to the middle of 2004. A variety ofcommunities were targeted both inside and outside of Japan. A variety of methods
were used, including opinion surveys on selected communities, information lectures
and academic conference meetings in different locations, including outside of Japan,
to gather input from Japanese living abroad, and meetings held in Japan. The
International HapMap project demanded community engagement efforts atparticipating project sites, 15 with significant influence from North American concepts_____________
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that it was required to consult the communities being approached, at least, if not the
public in general.

The recruitment of public participants to the HapMap project meetings wasannounced in a number of ways, for example via the Internet on the Japanese
project’s Eubios Ethics Institute website, 16 through mailing lists, newspaper flyers,posters, and leaflets dropped into mailboxes.

Community engagement team and meetings
The community engagement team included the authors, who have backgrounds inmedical genetics and bioethics. We held 12 events, comprising two public forums and
10 exploratory meetings, which involved around 200 participants altogether from a
broad range of social sectors including lay people and people from related sectors orfrom citizens’ groups interested in the topics, as well as experts from various fields(eg, genetics, law, sociology, politics, ELSI. The team assessed the meetings
afterwards and examined any conflicts of interests, potential harms to the donors, andother ethical issues raised.

Also, we approached other communities with certain related backgrounds, including
high scientific knowledge, experience in hospitals, biotechnology related industries orcompanies, and so on. This yielded a further 320 participants through nine exploratory
meetings.

In the meetings, participants were provided with information about the project,including scientific background to the HapMap project, ELSI issues concerning
individuals and communities, as well as about the informed consent process. This wasfollowed by questions, answers and discussions.

Following meetings for community engagement among potential donors, participants
were asked to contact the organizers if they decided to donate a blood sample for the
Project. Donations were only accepted from those who had attended the meetings.
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A permanent community engagement board was established after the samples werecollected for the function of post-use review of the applications to use the samples. If
any application was judged by the administrators of the samples to be potentiallycontroversial, the board was available to review the application. The board members
included medical and non-medical scientists, bioethics experts, media and consumer
group representatives. 17 A newsletter was published to make the information public. 18

Interviews
To understand the Japanese situation regarding genetic research from amultidisciplinary perspective as part of PE, we conducted personal interviews witharound 20 experts including scholars in genetics, law, politics and ELSI, as well as
individuals from citizens’ groups interested in related fields.
Results, analysis and discussion
Public engagement to empower ordinary people
1. Basically positive attitudes among general public in early phase
Both in exploratory meetings and public forums, lay people in particular expressed
positive attitudes toward medical/scientific research in terms of its social
contributions or helping other people. Examples of opinions expressed by meeting
participants include:

A: If it will be useful for the medical science research, [I would liketo donate a sample].
B: It will be my pleasure to contribute to academic research.
C: I feel that my blood will contribute to the welfare of humankind.

According to survey research conducted in 2003, 19 generally positive attitudes toward
genome research and DNA banking for a range of research purposes, including the
HapMap project, were expressed across Japanese society. People spoke openly about
their willingness to contribute to science and to help others. We observed a similartendency during PE for the HapMap project. This continues a trend observed in_____________
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survey research conducted since the early 1990s in Japan that basically Japanesepeople exhibit generally positive attitudes towards science and biotechnology basedon their high expectations of it. 20

2. Diverse public opinion
Consistent with results of earlier surveys, we identified a variety of ideas held by the
public in Japan. 21 Such diverse opinions cannot be easily categorized into positive or
negative responses. The provision in the meetings of various information, the sharing
views with others, the emergence of issues during discussion, and so on, led to theparticipants expressing more complicated opinions:

D: If it will be used effectively, I will donate because I canunderstand it is necessary that the bank has a sufficient number ofsamples. But I will donate on the premise that the samples will go to
the public institutes. I never donate my blood to any privatecompanies.
E: If the result will be utilized for myself, I will donate my blood …
[but] I’m not sure whether I can accept or not the use of samples
and data if they are kept by researchers for other purposes.

Diversification of opinions was also identified through focus group meetings on thesubject of life and biotechnology held in 1999-2000 in Japan. 22 A similar
diversification was shown in the responses to the questionnaire survey, which asked
for responders’ consideration rather than responses to simple multiple-choicequestions. 23 Lay people’s attitudes in particular tended to change depending on when,
how or in what kind of context the information was provided. While Japanese people
are very familiar with biotechnology and genetics and have been exposed daily to
information regarding these topics since the 1990s, 24 they are obtaining mostinformation passively or in a uni-directional manner from television programs,
newspapers, or the Internet, rather than in an interactive or educational context. Their
opinions need to be cultivated and consolidated through interactive, learning ordeliberative opportunities, for example, in order for them to be able to express theirreasoning and ideas.

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3. Confusion and embarrassment observed among lay people regarding the HapMap
Project
It was not easy for lay Japanese people to understand specifically the highly public
nature of the HapMap project, which produces a fundamental research platform andresource to contribute to a wide spectrum of future genetic research in the world.
Even with a basic comprehension of its purpose or significance, as well as its
associated risks, they were not empowered to compile and express their opinions.
Especially among lay people without a scientific background, some showed thetransition from initial positive feelings and high expectations towards more confusedor reluctant attitudes through PE:

F: I can’t understand such a technical matter.
G: I’m an amateur so I’m not confident to raise proper opinions.
H: It might be easier for me to just donate my sample without
participating in such activities [PE].

Such potential embarrassment was one of the main obstacles to lay persons’ active
involvement in the dialogue of the engagement meetings. Although they don’t need tohave the same level or quality of knowledge as experts in order to offer their opinions
as informed citizens in the engagement process, it is necessary for lay people to be
empowered if they are to do so.

4. Attitudes of participants with scientific backgrounds
On the other hand, even in the communities of people that had a reasonably high levelof scientific literacy (still considered lay people since they did not belong to expert
communities or were not scientific researchers, though some may be working inbiotechnology-related sectors such as industry or hospitals), difficulties were observedin the engagement process. There was evidence that, when discussions included
people who were relatively familiar with genome research topics as a result of theirjob, for instance, and who could understand the scientific background of the HapMap
project and who expressed a strong willingness to contribute to it without significant
fears, the nature of discussions in general public meetings became skewed towards
scientific matters rather than focusing on social or ethical aspects. For example:_____________
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I: It [the HapMap project] is quite understandable for me so I don’t
need to attend the meeting before donating.
J: Spending a long time and talking about very familiar topics is sortof a burden for me. I’m not worried about donating my blood.

5. Elements of literacy for PE
The diversification in the HapMap project community engagement dialogue did notnecessarily depend on the level of mere science literacy. It is necessary to examine theelements of literacy, other than the scientific, that are needed for the consideration ofissues regarding science and technology, as well as the methodologies andenvironment through which such literacy can be developed. Education in generalscience and bioethics is a basic premise, and based on that, specific elements ofliteracy in individual science and technology topics are also significant in the actual
PE process.

Also every member from a variety of social sectors should be helped to understandthe bounds of scientific knowledge as well as the uncertainty of scientific facts, when
they participate in the PE dialogue.

Excessive, simplistic and groundless expectations, as well as concerns about scienceand technology, might be moderated by the recognition that scientific knowledge isonly guaranteed at that point under particular/laboratory conditions and may not beensured in future or in practical social circumstances. Many social issues regarding
science and technology include the region that Weinberg called “trans science” 25matters that are necessary to develop social consensus at this moment, despite the factthat even natural or social scientists cannot answer some of the above-mentioned
questions.

6. Developing opportunities for interactive discussion and sharing views
Interactive communication in which opinions and views were shared among
participants or people in different sectors was observed to contribute to an increase in_____________
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people’s confidence about their understandings/opinions of the HapMap process.
Qualitative types of literacy might be more important to the PE process thanquantitative types. Learning and sharing views through interactive dialogue between
individuals and across different social sectors might enhance that qualitative phase.
By including participants from a wide range of social sectors including citizens’
groups, experts’ communities, etc., a public engagement process might construct
opportunities to exchange diverse information and knowledge within society. In thiscontext it should be recognized that participants in the PE process will have varying
degrees of literacy, and that each stakeholder will come to the discussion from adifferent background. Furthermore, a variety of comprehensive and pluralistic
methodologies for engaging the public in the dialogue or assessment process
regarding science and technology need to be prepared. 26 Currently, few suchapproaches are practised in Japan.

Public engagement to develop communication and cooperation based on trust
1. Trust issues among social sectors
Some strong scepticism was expressed toward the public engagement process or the
HapMap project from some social sectors. For example:

K (consumer group staff): You should not be involved in such a
process [PE] to justify controversial genome research if you don’t
want to be recognized as its instrument.
L (citizens’ group member): I think you are making excuses for the
project by involving lay people who cannot understand the technicalmatter at all. This is public relations posing as community
engagement.

It seems that the difficulties in understanding the Project caused and increased such
scepticism, especially among those with backgrounds of distance or distrustfulness
toward science and technology, which has been observed among social sectors
including experts’ communities in social science, citizens’ groups and lay people
towards biological science. Furthermore, the delicate nature of the HapMap project, inthat it deals with genome diversity between human races, might have made thesituation more complicated.
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Another source of distrust, which was found outside the general public or citizens’
sectors, concerned doubt regarding lay people’s capability to understand technicalmatters. For example:

Expert M (bio-industry worker): Real lay persons may not be able tounderstand anything about the project, [they are not appropriate as
representatives].
Expert N (geneticist): In general uninterested [in scientific research
program] people don’t come to even the explanatory meetings.
Expert O (geneticist): You had better not explain risks too muchincluding ones with low possibility, otherwise lay people will havetoo much fear and distrust toward the research and will refuse to
donate samples.

Such a sense of distrust might be based on stereotypes, which have often developed asa result of a few direct or even indirect bad experiences rather than through any
continual and interactive communication efforts. Even if we provided complicatedinformation about both benefits and risks to meeting participants, they were able tounderstand at least some of the Project, and sometimes used that information todevelop their opinions or decisions. While some people changed their positive
attitudes, expressing serious fears, others became more supportive of the HapMap
Project.

Wynne has used the term “institutional neuroticism” to describe diffuse anxieties andthe lack of trust within scientific communities towards the public, 27 Some scientists
say that lay people or society don’t trust scientists or science and technology, despite
their not understanding technical matters; but scientists don’t trust lay people, either.
The distrust towards science and technology that exists within society might becaused primarily by the scientific communities themselves. The efforts to promote
their scientific pursuits from social or public perspectives, not just their scientificones, and to develop communication with the public regarding their activities havelong been inadequate among the scientific communities in Japan. Without such efforts
by scientific communities, they cannot expect a relationship of mutual trust to_____________
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develop, but such a relationship could be established through practical endeavours tounderstand each other through interactive and sharing opportunities.

2. Opportunities for Scientific Researchers to engage with Citizens
As can be seen in the denial of deficit theory by reports such as Bucchi andNeresini’s, which showed that the more people knew, the more they expressed
concerns 28 , there is a wide gap between what experts or policy-makers consider theyknow and the real situation. To really grasp these gaps in understanding, it isimportant for people to experience the dialogues for themselves. PE processes canprovide that experience for people involved in the research program or scientificcommunities. Issues that scientific communities should or would like to know about
include: the background to public attitudes; the context in which people recognize orunderstand topics or issues; what they expect from science; and what concerns them
about it. In the efforts that scientific researchers make to understand citizens throughopportunities such as PE, it is important to involve and cooperate with expert actors
who can work as a bridge between science and society.

Scientific decisions by experts should not necessarily always be respected overopinions expressed by citizens on the basis of their discrete or specific experiences.
Also, a scientifically reasonable decision is not necessarily always coincident with theoutcome of proper social political decision-making. The understanding of suchrealities of the situation of science and technology related to social decision-making
by every social sector can become the foundation of co-operation regarding scienceby all of society through opportunities such as PE.

Challenges for Public Engagement in Japan
1. Examination and authorization of the engagement process
Some serious concerns regarding the HapMap project and the engagement activities
themselves were raised by experts from the sociology, law and bioethics
communities. For example:_____________
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Expert P (law): How will you control the discriminating sentimentsof some Japanese people toward certain ethnic groups?
Expert P (law): Do you have any particular idea how to handle thesituation easily caused by Japanese nature that people who express
strong opinions tend to have too strong initiative in the focus groupmeetings?
Expert Q (sociology): Who can be appropriate representatives ofsociety?
Expert R (bioethics): It is problematic that you don’t have any
systems to monitor and maintain transparency of the Project,
especially from outside.

In Japan social science research, including public engagement studies, does not need
to be approved by Institutional Review Boards (IRBs) 29 , in contrast to the situation in
many other countries in which all types of research with human subjects have to be
examined and approved by independent organizations before they are carried out. So,
although the process did obtain the approval of the IRBs as part of the donation
process, the community engagement related to the HapMap project was not examinedor authorized by anyone independently. Based on our anecdotal evidence, it would
seem that most IRBs in Japan consider themselves overworked with applications for
projects involving biological samples and thus cannot afford to deal with applications
from general social science studies, unless some risk of psychological harm toparticipants is foreseen.

2. Acknowledge position of public engagement in scientific research project structure
For those who were in charge of the HapMap project, including researchers andfunding agency officers, the pressures arising from the Project’s tight schedule and
the Japanese one-fiscal-year budget system imposed practical limits on the time
available for community engagement. Also, as described above, due to the history of
the Japanese biomedical science research environment they had had little experienceof including ELSI aspects and public engagement as a routine part of scientificresearch programs. For example:_____________
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Expert N (geneticist): We should consider the possibility of losing
willing volunteers or having people change their minds because of
the burden of talking so long time [PE] with them.
Expert S (economics): I’m very negative toward ELSI in general. It
is waste of resources as part of the genome project.

The quotes above might arise out of some controversial program designs of the
HapMap community engagement, which was conducted in parallel with sample donor
recruitment. Also, Japan’s one-year research budget systems could be an obstacle tothe allocation of resources to multi-year public engagement activities and research.
But the project protocol design for sample donor recruitment, which was conducted
subsequent to the earlier community engagement meetings in order to finish sample
collections in the limited period that the Project strictly required, raised issues among
the authors of this paper, 30 as well as other experts. These issues are not particular tothis study, or even to Japan, but to the whole question of balancing the limited funds
available for public engagement and the need to progress the development of scienceand technology. Some expert comments included:

Expert T (medical science): The relationship between community
engagement through meetings and sample collecting is unclear.
Expert U (co-medical): The sample collection and community
engagement should be conducted clearly independently to avoid
being criticized (by people who assume that public is engaged
merely in order to collect samples).
Expert P (law): The community engagement process is too
investigative to conduct simultaneously with sample donor
recruitment [sample collection], which must be done following strict
guidelines.

Given the background of ELSI and PE with regard to science and technology in Japandescribed above, the function of the group in charge of the HapMap community
engagement was not necessarily clearly identified even among actors/sectors involvedin the Project. The community engagement was considered as a part of the informed
consent process, rather than having an intrinsic mission of developing mutualcommunication with the public. The mission of the community engagement groupbecame to cover the broad spectrum from sample collection to engaging the public.
_____________
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However, if the entire process from sample donor recruitment to the obtaining of
informed consent is conducted by the same group members that conducted thecommunity engagement, as it was in the HapMap process in Japan, some outside theprocess may not trust the validity of the sample collecting processes. Even if thecommunity engagement team were separate from the scientific team, some critics
could always say that the community engagement group was merely conducting
project promotion or risk management for the Project. As a consequence, distrust andcriticism might be provoked, especially from expert communities in the humanities orsocial sciences. Similar dilemmas and dissensions were caused even within the
Project.

It is not viable to conduct PE without understanding and cooperation between every
sector involved in the research project, including scientists and funding agency
officers. When opposition to such efforts is common, therefore, a significant
challenge is how to create within the research organization a recognition of theimportance and necessity of PE or ELSI without raising suspicions of direct project
promotion,.

3. Institutionalization of PE in science and technology
PE and ELSI research activities need to be institutionalized in scientific research or
technology development programs. It is important to design the research project
organization so as to delineate the primary functions of the PE group. Also, somemechanism to secure objectivity and transparency is required. In almost all examplesof PE internationally, the PE elements are paid for by the scientific project, so all areopen to the criticisms described above. Moreover, social dialogue should bemaintained continually in the case of research such as the HapMap project, which
creates products and collects materials that will be used in a variety of future research.
However, under current Japanese one-fiscal-year budget systems, it is difficult toensure the budget for multiple years of PE activities. A more flexible system, which
would ensure the research budget to maintain public engagement even after
completion of actual sample collecting, DNA sequencing, analysis, etc., needs to beconsidered. That would also allow longer periods of community engagement prior tostarting the collection of samples.

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Also, the ways in which the outputs from PE can be addressed and exploited forscientific research or decision-making processes need to be examined. In the HapMap
project, the engagement process was designed to generate public input to the Project,and did not aim directly to affect the research design or protocols. Even though acertain degree of support for the exercise was evident, it was very difficult to rouseordinary people’s interest to be involved in the HapMap community engagement
without presenting a concrete aim of the process as output rather than contributing todecision-making, for instance. While it is not necessarily always reasonable ordesirable to reflect public opinions directly in scientific research or policy settings,
nonetheless we should carefully consider how to motivate the public to be involved in
the PE process in scientific research programs.

4. Necessity of comprehensive and basic studies of ELSI and PE
The idea that a certain amount of the budget and efforts of scientific research
programs should be allocated for ELSI activities was propounded by the Human
Genome Project. The ELSI concept included a wide range of elements such as
considering the social implications of the genome research, studying ethical, legal andsocial issues, encouraging public debate, and examining the methodologies forsocietal outreach.
The ELSI concept was then adopted worldwide and applied to scientific research ingeneral rather than only genetic research. The EU and Canada extended the amount ofand enthusiasm towards PE activities. A broad range of interdisciplinary research,which involves the public was suggested and supported in this research field,
therefore various research programs were conducted among the society. In thisprocess human resources with capabilities of PE were fostered. This process was alsosignificant in enhancing the recognition of ELSI as well as PE both in society andamong scientists.

In Japan, while the regulatory framework to conduct genome research ethically has
been developed in line with international standards since the beginning of the
2000s, 31 even basic research into ethical and social aspects, which should ground thedecision-making, has not been adopted enthusiastically by genome research programs.
Similarly, while PE is encouraged in specific fields like certain scientificcommunication in recent government initiatives 32 , comprehensive approaches havenot been adopted so far. Therefore, few researchers in Japan have examined the_____________
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possibilities for the institutionalization of PE or ELSI studies into scientific research
programs. The issues regarding PE or ELSI in scientific research or technology
development are not often discussed in society, even in newspapers or TV programs.
Under the current situation, neither the social recognition of PE and ELSI, nor thenecessary human resources, can be developed. It might be difficult to deal withemerging ELSI issues associated with recent progress in the life sciences ortransitions in social context 33 without the accumulation of sufficient knowledge frombasic and comprehensive ELSI studies.

Conclusions
Recently in Europe and the United States there has been a migration toward “public
understanding of research” or “public engagement in science and technology” basedon closer relationships between experts and the general public. Yet, while involving
more sectors of the public in science and technology is indeed significant, there are
only a few countries, such as New Zealand, 34 which have undertaken consultations on
science and technology involving more than a few lay persons.

As in many other countries, social, ethical or regulatory issues regarding areas ofscience and technology such as nuclear energy plants, genetically modified organisms(GMOs), tissue transplantation, infertility treatment and genetic testing, have createdpublic arguments in Japan. Negative attitudes among the public have sometimes been
seen as a serious barrier to the application of such technologies, therefore thenecessity to promote social acceptance has been claimed for a long time in Japan.
Nevertheless, engaging the public in the process of social decision-making has been
paid scant attention by actors in scientific research programs, or by funding agencies
and policy-makers.

One Japanese scholar in STS has pointed out that the participation of, and the sharingof ideas with, the public is essential for the development of appropriate riskgovernance based on the propriety of not only the political process but also issues ofanalytical adequacy, including in part the scientific component. 35 Ordinary people canhave broader perspectives on some issues than members of expert communities, andeach participant expresses their attitudes based on their own frame or knowledge. To
include their sense of value a broader range of issue framing and local knowledge_____________
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from lay people is very important to complement the decision-making process by
experts and policy-makers and to ensure the social propriety of decisions.

One of the immediate issues is to promote the view that coproduction with publicknowledge is essential to deal with “questions which can be asked of science and yet
which cannot be answered by science”. 36 The recognition that direct dialogue with the
public over science-based policy making should no longer be an “optional add-on”
but instead a “normal and integral part of the process” 37 needs to be shared by allsocial sectors including scientific communities, policy-makers, funding agencies andordinary people themselves.

A significant matter is how to foster “scientific citizenry” in society, whereby persons
with awareness of their own rights, duties and responsibilities consider and contributeto the decision-making process through the process of social dialogue or deliberation.
Also citizens might need to be more confident about their own self-determination
regarding science and technology, which should be made by individuals withresponsibilities as constituent members of society. This might be one of theprospective functions of PE: to empower ordinary people to develop their selfdetermination based on civil public participation. Other aspects to be fostered throughthe PE process include: dialogue based on mutual trust between science and society;respect toward science as culture in society; social recognition of science as being
important to citizens themselves, as well as to the next generation.

The HapMap community engagement was the first use of the word “engagement” in a
Japanese genome research program. However, it did not emerge spontaneously or
autonomously as the result of the situation in Japan, but was conducted in response to
the requirements of the international project. A variety of challenges to PE becoming
well understood/recognized and taking root in Japanese society could be identified in
the HapMap community engagement process. Establishing PE as a usual part ofresearch and incorporating a range of approaches is a future challenge for Japan. Thiseffort will ensure that science and technology have greater civil participation andsocietal ownership, and also empower citizens to develop their self-determination.
Acknowledgments_____________
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We appreciate the contribution of all those involved in the HapMap process in Japanand the international community, and the support provided by the grant given to the
HapMap team in Japan by the Ministry of Education, Culture, Sports, Science andTechnology. We especially appreciate all the comments from participants in themeetings described, and those interviewed.

1

University of Tsukuba, Graduate School of Life and Environmental Sciences, Tsukuba-city, Ibaraki,
Japan fwhv4551@mb.infoweb.ne.jp (Eiko Suda); Regional Unit for Social and Human Sciences in
Asia and the Pacific (RUSHSAP), UNESCO Bangkok, Bangkok, Thailand d.macer@unescobkk.org(Darryl Macer); Health Sciences University of Hokkaido, Hokkaido, Japan (Ichiro Matsuda).
2
S. Kobayashi. Japan's Governmental Initiative in STS. Presented in East Asian STS conference 2003.
http://sts.nthu.edu.tw/tsts/92W-paper/sinichi.pdf
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M. Haruyama. Kagakugijutsu to shakai no ‘taiwa’ to shiteno ‘gikai technology assessment’ – Europe
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http://www.ornl.gov/sci/techresources/Human_Genome/home.shtml
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D. Macer. The far east of biological ethics. Nature 1992; 359; 770.
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Ministry of Education, Culture, Sports, Science and Technology. 2004. Heisei 15 nendo
Kagakugijutsu no shinkou ni kansuru nenji houkoku.
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http://www.hapmap.org/
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The International HapMap Consortium. The International HapMap Project. Nature 2003; 426: 789796.
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http://www.coriell.org/ccr/ccrsumm.html
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M.W. Foster and R.R. Sharp. Beyond race: towards a whole-genome perspective on humanpopulations and genetic variation. Nature Reviews Genetics 2004; 5: 790-796.
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The International HapMap Consortium. Integrating ethics and science in the International HapMap
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13Charles Rotimi et al. and The International HapMap Consortium. Community Engagement andInformed Consent in the International HapMap Project. Community Genetics 2007; 10: 186-198.
14
Ministry of Internal Affairs and Communications http://www.stat.go.jp/data/jinsui/pdf/2-3.pdf
15
The International HapMap Consortium, op. cit, note 11.
16
http://www.eubios.info/hapmapj.htm
17
http://snp.ims.u-tokyo.ac.jp/CAG/JCAG/CAGmember.pdf
18
http://snp.ims.u-tokyo.ac.jp/CAG/JCAG/JCAG.html.ja
19
M. Inaba and D. Macer. Attitudes to biotechnology in Japan in 2003. Eubios Journal of Asian andInternational Bioethics 2003; 13: 78-90.
20
Ibid
21
D.R.J. Macer,. 1992. Attitudes Towards Genetic Engineering: Japanese and International
Comparisons. Eubios Ethics Institute.
22
F. Maekawa, and D.R.J. Macer. Interactive bioethics in a focus group on life and biotechnology inJapan. Law and the Human Genome Review 2001; 15: 173-201.
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23

Inaba and Macer, op. cit. note 18; E. Suda and D. Macer. Policy and Attitudes towards Collection of
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Inaba and Macer, op. cit. note 18.
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A.M. Weinberg. Science and Trans Science. Minerva 1972; 10: 209-222.
26
Institute for Policy Sciences. 2000. Kagakugijutsu to shakai, kokumin no sougo sayou ni kansuru
chousa kenkyuu. [English trans.: A study of interactions between science & technology and society &citizens.] In Kagakugijutsu to shakai, kokumin tono aida ni shoujiru shomondai ni taiou suru tameno
housaku touni kansuru chousa [English trans.: A study of policies dealing with issues arising between
science & technology and society & citizens]: 1999-2000 Kagakugijutsu shinkou chouseihi research
program, funded by Ministry of Education, Culture, Sports, Science and Technology.
27
B. Wynne. Public uptake of science: a case for institutional reflexivity. Public Understanding of
Science. 1993; 2: 321-337.
28
M. Bucchi and F. Neresini. Biotech remains unloved by the more informed. Nature 2002; 416: 261.
29
In Japan, officially social science research is not obliged to be examined by IRBs, which means thatsuch research can be conducted without examination and approval by IRBs. At least in current Japan,social science research and psychological research are not systematically obliged to be examined by
IRBs, but many people see such a situation as a problem. Certain institutions/universities set their own
rules and systems which require IRBs examination on broader range of research programs involving
human subjects such as social science research.
30
D.R.J. Macer. Ethical considerations in the HapMap project: An insider’s personal view. Eubios
Journal of Asian and International Bioethics 2003; 13: 125-127.
31
Suda and Macer, op. cit. note 22.
32
Ministry of Education, Culture, Sports, Science and Technology. 2004, op cit.
33
B.M. Knoppers and R. Chadwick. Human genetic research: emerging trends in ethics. Nature
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34
See the Report of New Zealand Royal Commission on Genetic Modification (2002)
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35
H. Hirakawa. 2003. Hukakujitsu sei, kachi, koukyou sei wo meguru risk communication no sho
mondai – risk governance no hi koukyou ka ni koushite. Presented at the annual conference of Public
Policy Studies Association 2003.
http://hideyukihirakawa.com/sts_archive/regulatory/PPSA/hirakawa20030615.pdf
36
Weinberg, op. cit. note 24.
37
House of Lords Select Committee on Science and Technology. 2000. Science and Society 3rd Report.
London. HMSO.

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