Because of the complex and often contentious issues that surround genetics research in diverse, identified populations, a workshop entitled, “Anthropology, Genetic Diversity and Ethics,” sponsored by the National Science Foundation was held to facilitate communication among researchers involved in studies of genetic diversity, ethicists and attorneys specializing in genetic and biomedical issues and members of some of the involved communities, including some opponents of genetic research in identified populations. 

Cultural anthropologists, archaeologists and anthropological geneticists all deal with the types of issues raised at the workshop.  Questions faced by many anthropologists today include: who speaks for a group, especially a nested group; the relationship of expatriate communities to the community of origin; community consultation and group consent; and disclosure of identity of both the individual and the community.  The impetus for the workshop came from a concern that proposals for research in anthropological genetics were not dealing adequately with these ethical and legal issues.  The workshop was designed not as a debate on any specific research project, but as a forum to discuss the best ways in which to pursue research. 

Research in Diverse Communities 

Nearly 50 people attended the workshop held on February 12 and 13, 1999, at the U of Wisconsin-Milwaukee.  Discussions were open and frank and on a number of points there was a broad agreement.  Presentations by the invited participants were followed by small group discussions on issues such as population identification, informed consent and research outcomes.  Examples of collaborations between researchers and populations were also highlighted. 

Workshop participants were able to reach consensus on some practices that facilitate research in diverse communities.  Successful collaborations need to be based, above all else, on established trust between researchers and study populations.  This implies: a long-term relationship among researchers and study group members; participation by group members as researchers or principal investigators; agreements protecting the financial and health benefits of the individuals and groups participating; and additional training opportunities for members of the study group for professional work in the project related area.  The group acknowledged that the specific historical and cultural context of the research project is of overriding importance—some situations will facilitate successful research collaborations, others will preclude it no matter what the attention paid to matters of informed consent, anonymity or sharing of information. 

Group Consent 

Several examples of long-term research relationships with communities in various parts of the world were examined.  Lynn Jorde, Mike Bamshad and J M Naidu described a project in India where researchers from the US aided in setting up a laboratory at Andhra U in India and trained local scientists in PCR technology.  Jonathan Friedlaender described the changing nature of a 30-year project in the Soloman Islands.  Jeffrey Long and Morris Foster described on-going medical genetics research projects with native populations in North America.  Charmaine Royal described a successful study on prostate cancer in African Americans where African American physicians collected samples that were analyzed at Howard U. 

The nature of group consent, including when and how to obtain it, was the subject of 
considerable discussion.  Some local populations find it particularly troubling that blood and DNA samples can be stored or transformed into cell lines.  There was considerable concern that, while consent may have been given for a particular project, this long-term storage makes it possible to use samples in ways not originally described or intended.  One way to address this concern is to have a policy of returning to the local community for consent on all projects.  Another is to return or dispose of samples in culturally appropriate ways after a study has been completed. 

Other examples of group consent and population identification concern ancient DNA.  Dennis O’Rourke described a pilot study of skeletal materials found in Alaska.  Agreements with the Aleut corporation allowed the material to be analyzed and the population is interested in further studies.  O’Rourke has entered into an agreement with the Nunavat territorial government in eastern Canada to provide quarterly reports in English on the progress of current research on eastern arctic samples.  He will also provide reprints of all published work along with a non-technical summary of the publication translated into the native language. 

Patenting and Stigmatization 

There remain several unresolved issues, one of which concerns patenting gene segments.  Alice Martin, a geneticist and intellectual property attorney with Barnes and Thornberg in Chicago, detailed the patenting process in the US.  Another issue was whether population history studies using genetic information face the same controls or restrictions as medical or disease related studies.  Also of concern are the effects of these studies on populations.  Both individuals and populations may worry about being stigmatized by the results of a disease-related study.  Members of populations may also feel that population history studies oppose their origin beliefs.  Given the potential risks to a population, Foster argued that anonymity should be the default position for all population studies.  Others opposed this for both medical and population history studies, and argued that anonymity may lead to some groups not receiving adequate treatment for certain illnesses.  Since there is little information on whether the perceived risks to a population were in fact realized.  Bamshad suggested that one potential avenue for research would be to determine the actual realized risk in populations. 
 Several participants felt that these discussions should be continued in a wider forum.  While geneticists need to work to inform the public of both the short and long term potentials of genetic research in identified populations, they also need to have broad discussions about the implications of this research for the identified populations. 

[Invited participants of the Anthropology Genetic Diversity and Ethics workshop included Mike Bamshad, Lynn Jorde and Dennis O’Rourke (U Utah), Frank Dukepoo (Northern Arizona), Morris Foster (U Oklahoma), Jonathan Friedlaender (Temple), Henry Greely (Stanford), Eric Juengst (Case Western), Frederika Kaestle (U Michigan), Jeffrey Long and Charmaine Royal (NIH), Alice Martin (Barnes and Thornberg), and J.M. Naidu (Andhra U, India).]