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The History of IGHC (continued)

At our first workshop[1] on 24-26 September 1998 on Health & Global Human Genetic Diversity, 17 invited participants and other guests from the Mid-West and as far away as Florida, Maine, and California met at the Field Museum of Natural History to consider what might be done to:

Avoid poorly-informed assessments of how human genetic diversity co-varies with disease, ancestry, social practices, etc.
Develop comparable data sets so that information can be shared among researchers in complementary scientific fields.
Help assure that future studies will lead to responsible advances in our understanding of the etiology of disease, specific public health recommendations, and better information on human genetic diversity.

Planning for this workshop began more than a year before the publication of the 1997 NRC report, and the 1998 workshop was not intended to be a response to the NRC report. However, the issues discussed in Chicago in September 1998 can be framed succinctly by reference to this earlier report and its recommendations:

As noted by the NRC report, moral, ethical, and legal issues concerning the use of human subjects in genetics research cannot be met fully by adopting its recommended Strategy III research design, especially when research is being done on populations beyond the customs, laws, and regulations of the United States.
Studies on disease causation are of great social and medical value.
Since the potential social and medical benefits of genetics research on disease causation is so great, exhaustive research studies are being done even though they are costly.
The design of robust studies, however, is not self-evident and needs to be further assayed by the scientific community.

The 1998 Chicago Workshop was a 3-day series of small group and plenary discussions focused on four broad questions:

How should we collect data on health, environment, ancestry, cultural practices, etc.?
How should we collect, handle, process, and curate human biological samples?
What methods (statistical, graphical, etc.) should we use to analyze genetics data and all associated cultural, social, medical, etc. information?
What ethical, moral, and legal guidelines and safeguards should we use?

The 3rd day of the workshop included a public symposium moderated by Mara Tapp (Chicago radio host) at which Virginia R. Dominiguez (Anthropology, Iowa) delivered the keynote address sharing her experiences with, and the thinking behind, the National Research Council report on the HGDP commission by the National Science Foundation in conjunction with the National Institutes of Health. Additional thoughts and comments were provided by invited participants representing Anthropology (Jane Hill), the lay community (Walter Reed), and health care (Martha Holstein).

While the word "consensus" can be easily overworked, by the close of the 1998 Chicago Workshop many of the participants were generally persuaded that:

Research in human genetics designed to be intelligent, careful, considerate, and ethical should focus on health & genetics (not simply on population genetics issues, say, or reconstructing the prehistory of human migrations).

There are ways to foster and coordinate research findings obtained in conjunction with medical as well as scientific studies to achieve at least some of major objectives of the controversial HGDP without having to invest significantly in building a centralized infrastructure or research facility (as proposed for the HGDP by some).

Investigators must develop more effective ways to share information across the boundaries of the various scientific disciplines so that we actually make sense of our global diversity.
The workshop participants concluded that efforts should be made to foster genetics research that is:
Problem-oriented and of benefit to people throughout the world.
Proactive rather than reactive in developing adequate protocols, standards, and safeguards for human genetics research.
Done using a common framework for sharing complex data sets across research boundaries-perhaps following the lead of modern geographers who have had to develop huge geographic information systems (GIS) for local, state, national, and international governments and organizations.

  The participants at the 1998 Chicago Workshop agreed that the "horse is out of the barn." Scientific teams and commercial enterprises are actively gathering genetic information from diverse human populations "as we speak." Yet there is little agreement on what, how, or by whom human biological samples and associated information should be collected, studied, and archived.

Notes:

  1. Organized by John Edward Terrell, PhD, Department of Anthropology, Field Museum; and Sloan Williams, PhD, Department of Anthropology, University of Illinois, Chicago; with major funding from the Office of the Vice President for Academic Affairs, The Field Museum.
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