Opening Remarks by Trudy Turner*
I'd like to welcome you to this workshop, Anthropology, Genetic Diversity,
and Ethics. The impetus for the workshop came from discussions with
Dennis O'Rourke, Mark Weiss, and others at NSF, where there has been a
concern regarding the way in which ethical and legal issues are addressed
or not addressed in proposals relating to genetic research. Out of
these discussions, Mark Weiss and I began to plan the workshop. This
workshop was designed to bring together researchers interested in pursuing
genetic research in diverse populations, with anthropologists, ethicists,
attorneys, and representatives of populations, all of whom have some familiarity
with the ethical and cultural issues involved in such undertakings.
As we are all aware, genetic research has expanded enormously in the
past ten years, primarily due to significant technological innovations.
As genetic research accelerated, questions arose about the use of diverse
population samples. Researchers are looking increasingly at specific
populations to elucidate genetic diversity, to discuss genetics and disease,
and to trace human origins and population movement. While there are
multiple and important reasons to expand the study of genetics and diverse
populations, there are ethical and social concerns that surround this expansion.
It is crucial for researchers to be familiar with successful research protocols
and models for population identification, informed consent, and research
outcomes. These protocols and models may differ from population to
population, and will certainly derive from the interaction of all parties
involved, including geneticists, anthropologists, and representatives of
There is a clear need for multidirectional communication and collaboration.
This is the primary aim of this workshop. There are multiple projects
in human genetics. We are not here to engage in a debate on any specific
project, but to discuss the best ways in which to pursue research.
A goal we share is to maximize the benefits for humanity, while minimizing
the risks and upset to individuals in populations. We are aware that
this workshop is not a first step, a twentieth step, or even a hundredth
step in this communication process; but it is a step in an ongoing process
of dialogue and discussion. There was a very wide call for participation
for this workshop. Notice of the workshop was sent to all members
of the American Society of Human Genetics, the American Association of
Physical Anthropology, and the American Association of Anthropological
Genetics. All Ph.D.-granting departments in Anthropology, departments
of science and technology, major urban museums and medical schools in the
Midwest, were sent notice of the meeting. In addition, notice of
the meeting was available to listservs for bioethics and Native American
scientists and engineers. Participants in the workshop are drawn
from all these venues. We recognize that there may be a diversity
of opinion expressed during the workshop. In order to facilitate
all parties being heard, we ask that you please follow these guidelines
for the large group discussions. Comments during the general and
open discussion should try to respond to previous discussion. In
addition, no one person should speak more than twice during a single discussion
session, and no one may speak a second time until every person who wants
to has an opportunity to do so, given time constraints.
And I want to give you some information on the format of the workshop.
Each session will begin with two to four speakers. After the speakers,
there will be a brief question and answer period -- after all the speakers
have finished, we will have this question and answer period. We'll
then break into small groups for additional discussion. The discussion
in the small groups can focus on the material presented by the speakers
or on the general questions for the session. These questions can
be used to identify other issues for discussion. Each discussion
group will be asked to identify three points to bring back to the whole
group at the end of the small group discussion. Each group will have
transparencies, and you can write out these three points, and they can
be presented back when the whole group reconvenes. Your packet contains
more detailed instructions for each small group discussion. So, basically,
the pattern that we are going to follow is presentations, questions, small
group, and then return back for a larger group discussion. All of
you have been assigned discussion groups; you can tell by the little colored
dots on your nametags. Your group is designated by the colored dot
on your nametag. There are three dots. The groups change composition
over the course of the workshop: the first dot is for today's sessions,
the second is for tomorrow morning, and the third dot is for tomorrow afternoon.
This way, everybody will get kind of mixed up and they will talk to everybody
else during the course of this workshop. Now, I want to let you know
that there are also some additional readings that have come in, and those
can be found out on the table.
This is my opportunity to thank some of the people who made this workshop
possible. I want to thank Kathleen Woodward, the Director of the
Center for Twentieth Century Studies. The Center is sponsoring the
workshop at UWM, and has been instrumental in insuring its success.
I especially want to thank Carol Tennessen, Patti Sander, and Nigel Rothfels
of the Center, for all their help and expertise. Tony Ciccone of
UWM's Center for Instruction and Professional Development graciously spent
time discussing the mechanisms of workshop organization. I would
also like to thank the staff of the Anthropology office, Jean Bauer and
Christine Ruth, for their continuing assistance. Many of you have
dealt via phone or e-mail with Angela Shand. Angela is the program
assistant for the workshop, and has been a very able right (and possibly
left) hand through this whole undertaking. This workshop would not
have happened without her. I also want to thank all the invited participants
in the workshop. They have given of their time and expertise, and
have helped immeasurably in clarifying and refining the program.
I'd also like to thank the Dean of the College of Letters and Science at
UWM, the Center for Bioethics at the Medical College of Wisconsin, and
the American Association of Anthropological Genetics, for their support.
The workshop is sponsored by the National Science Foundation.
I'd like to now turn the program over to Eric Juengst, who will be the
chair of the first session.
*This talk has been edited for web publishing by the author.