This project's goal is to begin to stimulate communication between genetic researchers and community organizations regarding research on genetic disease. The importance of this goal is widely recognized. The NIH recently emphasized the need for greater coordination between genetic researchers and communities in its """"""""Points to Consider When Planning a Genetic Study That Involves Members of Named Populations."""""""" It recommended that investigators conduct community consultations prior to initiating their studies. This project looks to advance this mandate in two ways: it will help investigators identify the elements of research that most concern community organizations, and it will help community organizations better understand investigators' aims. To achieve its goals, the project aims to: 1) understand how and why investigators link genetic disease to named populations; 2) understand how community organizations respond to genetic research and disease linkages; 3) stimulate a dialogue between genetic researchers and community organizations on social risk, the processes of community consultation, and informed consent; 4) develop materials that begin to inform researchers about the implications of using racial and ethnic variables in genetic research and about social and ethical issues of importance to community organizations; and 5) develop materials that begin to inform community organizations about the methods, goals, risks, and benefits of genetic research, and the processes of community consultation and informed consent. The project will conduct empirical research to answer these questions: a) how do investigators identify and study specific groups, inform the groups about their research, and present findings about the groups' genetic predisposition to a disease? b) by what processes do community organizations assess the potential benefits and risks of being identified with a predisposition to a genetic disease, and encourage, modify, or oppose such research? This project will proceed on two tracks, conducting in depth focused interviews with: a) genetic researchers, both those who conducted research in the 1970s on single-gene diseases and those who conduct research today on multifactorial diseases; and, b) community organizations' leadership and analyzing archival data on the organizations. The project will generate four products that seek to contribute to a climate of increased communication and cooperation between these two groups.

National Institute of Health (NIH)
National Human Genome Research Institute (NHGRI)
Research Project (R01)
Project #
Application #
Study Section
Special Emphasis Panel (ZRG1-ELSI-1 (90))
Program Officer
Ota Wang, Vivian
Project Start
Project End
Budget Start
Budget End
Support Year
Fiscal Year
Total Cost
Indirect Cost
Columbia University (N.Y.)
Internal Medicine/Medicine
Schools of Medicine
New York
United States
Zip Code