Ethical opportunities offered by the Human Genome Diversity Project

I have entitled this paper ethical opportunities rather than problems because I think we have much to learn from the issues raised and the process. Some of the mechanisms developed to answer the concern, such as the notion of group consent, have potential to be used elsewhere. The attention paid to the HGDP has made population geneticists more cautious of the types of projects they conduct, and made the ethical review more concrete. We have seen the emergence of guidelines, including the Human Genome Organization (HUGO) Ethics Committee (1997), Statement of Principled Conduct of Genetic Research, which is being applied to genetics research in general. Ironically, probably the HGDP with the attention it pays to ethics review will have less ethical problems than most population genetics and anthropology research that continues today, so these researchers still have more to learn from the debate over the HGDP.

Personally, the HGDP was also an ethical opportunity to learn of more diverse views over a scientific project. The need to support diversity is well recognized in international law, but not always in ethics or practice. My work in generating dialogue and revising drafts of a UNESCO International Bioethics Committee (IBC) subcommittee report on population genetics gave me the privilege to meet and contact sincere individuals on both sides of the debate (Chee et al. 1996). Elsewhere I have considered the views of some non-governmental organizations (NGOs) including HUGO, some indigenous persons groups, and RAFI (Macer, 1997). In this regard I would refute the statement by Resnik (1999), saying that although a 1994 HUGO report supported the HGDP, as a member I would share that the HUGO Ethics Committee did not share such unanimous support for the project by 1998. More clearly, the UNESCO report did not support the HGDP; rather it raised a number of ethical issues and gave a balanced view. Sadly, the opportunity for ethical dialogue at an international level by a mixed committee of all sides has been stalled since 1997 (Macer et al. 1998), and the issues are being addressed, or not, on regional level in a way which still has some critics.

Resnik (1999) has raised some of the major concerns and presents some discussion, and solutions to the problems, namely racism, gene patenting, exploitation, protecting indigenous cultures and people, informed consent and group consent. I will just discuss some of these and supplementary issues in terms of the opportunities presented.

1. No endorsement of a particular population genetic project;

2. Call for establishment of a separate ethical committee that is available to all population genetics researchers;

3. Discussion of variety of ethical, ethnic and social issues.

Current population genetics research is under the oversight of different layers of control which vary widely around the world. This oversight ranges from the discretion of individual researchers, consent from the persons who provide the tissue samples, consent from the groups being studies, to several layers of ethical committee. International regulations on research involving human subjects are clear that informed consent is needed. Some funding agencies demand ethical review, such as NIH-funded research in the USA, and here the NRC Report discussed by Resnik has its biggest impact. Some universities in the world also demand ethical review, and the trend is to have more review.

The HGDP makes us consider our roots and there importance (or not) in modern society. There are a few thousand population groups in the world, only some members of these are active as indigenous peoplefs groups. gHow many generations link you to your home?" is related to the definition of who is indigenous? Maybe all people are indigenous to somewhere; however, minority groups have reason to be more afraid of abuses than those of a majority. The alleged abuses of genetics that they raise are relevant to us all, as they raise questions of how the knowledge will be used as well as how the research will be conducted.

At the community level, the health data could be utilized as an ethical opportunity for the improvement of local community health. Thus, benefits should also flow back to the groups and communities in the form of contributing to the formulation and implementation of local and national health care policies that would enable communities to better their positions. Commercial benefits could be expressed in other ways. While there could also be provision for a one-time gift of cells or blood with no conditions, as is found in some tissue donation forms for blood and body tissues, can one individual sign away commercial rewards to future research knowledge for the population to which they belong? It may be technically possible to conduct the new HGDP, as population genetics research among students of an international university, with them giving their cells to science, and whether their group likes it or not, the students represent their population.

The application of the ethical principle of informed consent and respect for integrity is a complex process at the level of populations. In order to ensure that that potential subjects understand the goals of research, the risks involved, the use to which research results could be put, and the rights of the groups and individuals under study, careful consideration is needed. If group consent is accepted, it is then a task to identify the most appropriate persons with whom to communicate, the persons from whom clearance should be obtained, and the appropriate content and media of communication. Research will need to take account of the group's social organization, goals and aspirations, cultural values, and laws (both statutory and customary).

Various groups of indigenous peoples have expressed their irritation with past population genetics research, which they claim has been conducted without prior consultation and in a way where consent was obtained in terms inconsistent with their cultural norms. In this respect the HGDP presents an opportunity for dialogue and ethical research, even if a population decides not to be a part of the research, this will be an accomplishment in bioethics in itself. The Mataatua Declaration on Cultural and Intellectual Property Rights of Indigenous Peoples of June 1993 (5) called for a halt to the HGDP until its impact has been discussed. Article 3.5. of the Declaration calls "for an immediate halt to the on-going 'Human Genome Diversity Project' (HUGO) until its moral, ethical, socio-economic, physical and political implications have been thoroughly discussed, understood and approved by indigenous peoples". The Declaration is actually not anti-science, and includes a call for involvement in scientific research, recommendation 2.11, "Ensure current scientific environmental research is strengthened by increasing the knowledge of indigenous communities and of customary environmental knowledge".

If this opportunity is taken for researchers to be subject to greater scrutiny, the same holds true for the media whose duty of honest, scientific reporting and preservation of privacy needs to be underscored. Whole populations, communities and the researchers themselves have often been wrongly depicted and wrongly represented with the resulting unjust labeling and discrimination. Such practices only serve to undermine public confidence and participation in research. Let us hope that all will be responsible.

References

Chee, H.L., El-Hamamsy, L., Fleming, J., Fujiki, N., Keyeux, G., Knoppers, B.M. & Macer, D. (1996) "Bioethics and human population genetics research", pp. 39-63 in Proceedings of the UNESCO International Bioethics Committee Third Session, Volume I (Paris: UNESCO, 1996). <http://eubios.info/PG.html>.

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