Toward an Understanding of Benefit Sharing:
Specific Aims

There are numerous stakeholders involved in promoting, funding, and performing genetics research, including patients, disease-specific groups, foundations, the government (in the US, this includes the NIH as well as other federal and state agencies), researchers, universities, and commercial firms (including biotechnology and pharmaceutical firms). Patient groups and foundations play an important role in the discovery process, and they have been asserting greater claims of ownership and control over the fruits of their efforts. Yet, extant policies provide little recognition of their contributions, typically rewarding intellectual and monetary investments in research. These policies are being challenged, both in human genetics research and more generally in global research efforts drawing on indigenous resources and traditional knowledge.

Despite the increasing involvement of patient groups and foundations in research and the problems that their equitable claims raise for researchers, universities, and companies, there has been little systematic discussion of how best to satisfy the interests of all stakeholders in an equitable manner. 

The specific aim of the proposed conference is not to find consensus, but to examine and describe the interests and motivations of stakeholders in biotechnological invention and recommend ways in which the interests of the parties involved in discovering the genetic bases of disease and developing treatments and cures may best be satisfied.