Toward Consensus on Benefit Sharing in Genetics Research

Patient groups are becoming more active in promoting and facilitating pre-clinical and clinical research. While patient groups have long played a key role in participating in research, various groups have or are starting foundations for funding research, compiling disease-specific patient registries and genealogical and medical databases, and establishing tissue and DNA banks to provide resources crucial for genetics research. Individuals involved in these initiatives and their families often participate directly in research. This developing role has occurred concurrently with two other significant changes in biomedical research: the creation and rapid evolution of technology transfer and the explosion in biotechnology science and investment. The close collaborative relationships with scientists greatly facilitate targeted research by providing access to affected communities, giving highly motivated assistance in identifying and soliciting potential participants from these communities, lending credibility to the researchers that can increase trust and participation, and sharing the costs of recruitment. But the relationship and involvement of the subjects also raises equitable claims to share in the financial fruits of research. The proposed conference will bring together numerous constituencies interested in genetics research, including patient and disease advocacy groups, foundations, the NIH, researchers, universities, pharmaceutical companies, and biotechnology firms, as well as bring disciplinary expertise in intellectual property law, economics, and health policy. The goal is not to find consensus, but to identify key issues and generate ideas to best satisfy the interests and needs of all involved parties.