Ethics and Intellectual Property:
Toward an Understanding of Benefit Sharing

As genetic research continues to forge ahead, the systematic discussion about how different stakeholders in genetic research perceive and prioritize the social, ethical, and legal implications of gene patenting has been woefully insufficient. Since the Spring of 2001, the Center for Bioethics has been working toward improving the understanding of intellectual property rights as they evolve in response to advances in genetic research. Under the direction of Senior Fellow Jon F. Merz, JD, PhD, and through the support of the National Institutes of Health, the Alpha One Foundation and the Juvenile Diabetes Research Foundation, our Ethics and Intellectual Property: Toward an Understanding of Benefit Sharing project aims to capture the perspectives of those groups, including patient groups and foundations; researchers; the government (in the US this includes NIH as well as other federal and state agencies); universities, and commercial biotechnology and pharmaceutical firms who have a stake in the process and products of genetic discovery. The goal of the project is to develop model policies that will advance genetic research in ways that will serve the interests of all of the parties involved. 

The first phase of the project involved a meeting of disease advocacy group representatives that was held at the Center on August 1, 2001. The objectives of this meeting were to: 

1. improve understanding of the perspectives and experiences of disease-specific advocacy groups; 
2. educate participants about the legal and ethical environment confronting medical research; and 
3. facilitate discussion and networking among meeting participants. 

A summary of the day's discussion can be found here. As a result of this meeting, the need for patient groups to better understand the fundamentals of gene patenting was identified and later met by a primer written by Dana Katz, M.Be., the project's manager. 

The second phase of the project is to convene a set of stakeholder representatives for the purpose of elucidating both their common goals and competing interests as they relate to gene patenting. The goal of this meeting, which will be held on Monday, March 3, 2002 in Philadelphia, Pennsylvania, will be to develop model policies that will guide the future of intellectual property negotiations in genetic research. At this meeting, stakeholder representatives will present commissioned papers that will outline the viewpoints of the group they represent. We anticipate these presentations to generate discussion among the meeting's attendees.

The findings of the project will be compiled into a book or a special issue of a peer-reviewed journal. Also, a white paper will be produced and disseminated to policy makers, the public, and the press. The findings of the project will also be available on http://www.bioethics.net.