|Reprinted by permission of the American Anthropological
Association form Anthropology Newsletter (Vol. 40, No. 5, 1999).
Anthropology, Genetic Diversity and Ethics
By Trudy R. Turner (University of Wisconsin-Milwaukee)
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.
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
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).]