Evaluating Human Genetic Diversity (1997) / Chapter Skim
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5 HUMAN RIGHTS AND HUMAN GENETIC -VARIATION RESEARCH
5 HUMAN RIGHTS AND HUMAN GENETIC -VARIATION RESEARCH
Pages 55-68
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From page 55... ...
In short, as the scientific community seeks to conduct genetic variation studies with people from an ever-wider variety of populations, it increasingly faces the challenge of respecting the rights and interests of research subjects who participate in the research both as individuals and as representatives of groups. The research-design questions that this challenge provokes are not new to human biology or peculiar to the study of human genetic variation; they have been encountered many times in the contexts of human population genetics, biologic anthropology, and epidemiology.
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From page 56... ...
CONTEXT OF CONCERNS ABOUT STUDYING HUMAN GENETIC VARIATION Human Genetics and the Misuse of Scientific Information One of the concerns expressed by public reaction to the call for genetic diversity research is that such research could inadvertently exacerbate, rather than lessen, the habit of assigning people to socially defined ethnic categories for political and economic purposes. This habit, of course, long predates scientific thinking about human genetics.
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From page 57... ...
As the history of blood-group genetics suggests, scientific studies that accept and use socially defined human taxonomies as biologically based can give inappropriate substance to those categories and lend credibility to the policies that they suggest (Barkan 1992~. The Rio de ,Ianeiro Biodiversity Summit and Genetic Exploitation A second common theme in the international reaction to calls for human genome diversity research is concern over potential commercial exploitation of the participating individuals and social groups.
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From page 58... ...
However, translating the kinds of protections that medical geneticists have adopted for individuals and family-research subjects into protections for entire social groups might require more radical changes in the traditional professional practices of biologic anthropologists and population geneticists than the ones that medical geneticists had to face. ETHICAL CONSIDERATIONS IN THE DESIGN OF HUMAN GENETIC-VARIATION RESEARCH The extent to which the issues raised above become challenges in research on human genetic variation will depend heavily on the goals of the research and the sampling strategy used to achieve them.
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From page 59... ...
Thus, Article 7 of the International Covenant on Civil and Political Rights specifically provides that "no one shall be subjected without his free consent to medical or scientific experimentation." The requirement to obtain people's informed consent to participate in research ensures that they have enough information about a given project to weigh the benefits and risks associated with becoming involved in the research before they agree to participate. It is a recognized principle of research ethics that research involving risks not be conducted on populations who will not be able to benefit from the research if it is successful (CIOMS 1993~.
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From page 60... ...
that cannot be linked to identifiable persons, geographical areas, or populations would pose the fewest ethical concerns for genetic variation research. The absence of identifiers that could be used to associate specific genomic variations with specific human populations avoids the risks of inappropriately treating socially defined groups as biologic lineages and exacerbating existing social problems.
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From page 61... ...
Surveys of self-identified minority groups in given locales typically reveal greater heterogeneity than that recognized by central government authorities unless it benefits the central government to declare that a group of people claiming "peoplehood" is too heterogeneous to be considered a group for political purposes. Regional-level, such as state, governments might give people the name of the administrative center under whose jurisdiction they fall.
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From page 62... ...
Investigators should involve appropriate community representatives in the design of their sampling strategies, collection methods, and reciprocity agreements before any plan to sample a particular group is considered final or any individual is approached for consent. This process could take different forms with different populations: meeting first with local scientists in one context, with community leaders in another, or with lay groups devoted to particular genetic diseases in another.
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From page 63... ...
The information needed to obtain informed consent must be conveyed by the investigator in language that the subject is capable of understanding, including the research, its duration, reasonably expected benefits, foreseeable risks, alternative procedures, the extent of confidentiality, the availability of compensation, and the facts that participation is voluntary and that the subject may withdraw at any time without penalty (guideline 2~. If the investigator has difficulty in communicating with the prospective subjects "to make prospective subjects sufficiently aware of the implications of participation to give adequately informed consent, the decision of each prospective subject on whether to consent should be elicited through a reliable intermediary such as a trusted community leader." However consent is obtained, all prospective subjects must be clearly informed that their participation is entirely voluntary and that they are free to refuse to participate or to cease to participate at any time without loss of any entitlement (commentary on guideline 8~.
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From page 64... ...
Nonetheless, researchers will have to make sure that their participants understand both the objections of their community and the rationale for them as part of the informed-consent process and, when doing research that is opposed by a specific community, will also have to take into account the possible impact of doing such research on the likelihood that other communities will cooperate with other geneticvariation researchers in the future. Individually Identified DNA Sampling Any sampling strategy that collects enough phenotypic, genealogic, or other ethnographic data to identify individual human sources of the DNA has the potential to put individual subjects and families at risk for confusion, intrafamilial disruption, stigmatization, and discrimination (Juengst 1996~.
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From page 65... ...
To be consistent with practice in other fields of human genetics, the disclosure of the results of the research to the general public through scientific publications should be negotiated with the representatives of the donor groups (Powers 1993~. It is not ethically or legally acceptable to ask research participants to "consent" to future but yet-unknown uses of their identifiable DNA samples.
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From page 66... ...
However, this adds a dimension to informedconsent negotiations that is foreign to most social and biomedical scientists: negotiating over what the participating group receives in return for participation. Perhaps the most contentious issue in the short history of human genetic diversity research is the growing practice of patenting cell lines and gene sequences.
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From page 67... ...
Nonetheless, much or most of the international controversy over collecting genes to study human genetic variation would disappear if the patenting of genes and gene sequences were outlawed. Outlawing the patenting of human genes and gene sequences would solve one immediate problem, but it would not address the controversy over patenting human cell lines.
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From page 68... ...
, emerging possibilities for commercializing biomedical knowledge, and heightened awareness of the stigmatizing potential of genetic information all increase public concern about human genetic variation research. To the extent that human genetic variation research must continue to rely on socially defined human groups as surrogates for human domes (until technology to infer dome membership exists)
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