There is room right now for discussion of how a new relationship between researchers and participants in genetic research should look, a discussion that should involve both parties. Incorporating genetic research into survey studies may provide an opportunity to engage the general population in this discussion. Rethinking the relationship between the parties in genetic research will also force examination of the researcher-participant relationship in general, and will require a reexamination of the nature of genetic information and research and how they are similar to or different from other types of medical information and research.

In genetics, the one constant seems to be change. What is understood about genes and the genetic mechanisms of disease changes over time with further research. Data regarding the potential risks and benefits associated with participating in genetic research change. Laws affecting access to insurance and other social goods change. Federal regulations affecting genetic tests and patent decisions change. The capacity for clinical intervention in various diseases changes. Some sort of mechanism is needed to respond to these changes and to provide advice to researchers and participants in genetic studies.

It is unrealistic to expect the IRB system, with its current level of support, to bear the responsibility for responding to the constantly shifting sands of genetic research. Others have recommended that a national advisory committee on genetic testing be formed (Institute of Medicine, 1994; Task Force on Genetic Testing, 1997). As a result, the Secretary’s Advisory Committee on Genetic Testing (SACGT) was recently established, and provides recommendations to the Secretary of Health and Human Services on genetic testing and research issues. The SACGT may address “the development of guidelines, including criteria regarding the risks and benefits of genetic testing, to assist Institutional Review Boards in reviewing genetic testing protocols in both academic and commercial settings” (http://www4.od.nih.gov/oba/sacgt.htm). As policy makers and investigators consider adding a genetic component to existing and planned demographic studies, they should look to the recommendations of this body and others. For large household surveys with already existing advisory committees, one way to do this would be to expand committee membership to include people who are familiar with ethical, legal, and social issues associated with genetic research. The advisory body could then provide oversight and advice on the collection of samples; the informed consent process; privacy and confidentiality issues; and the interplay of various study procedures and ethical, legal, and social issues.