GENETICS AND BIOTECHNOLOGY
These papers, by the staff and associates of the International Institute for Indigenous Resource Management, were developed, all or in part, with the support of a grant, DE-FG03-00ER63004 from the U.S. Department of Energy Office of Science. The Institute came to the ethical, legal, and social issues of genetic research as a logical consequence of our work on the implications, for indigenous peoples, of risk science, radioactive waste management, and intellectual property law.
These papers are also the result of Institute sponsored roundtables on genetic research issues. Through these roundtables, tribal leaders, legal scholars, researchers, representatives of non-governmental organizations, and others identified critical gaps in our knowledge of the native peoples-genetic research interface and set out the policy, legal, and scientific research agenda required to fill those gaps. For example, we knew native peoples objected to the diversion of tissues, ostensibly taken for medical research, to support research on migration studies. What our roundtables pointed out was that we did not know the extent to which such diversions occur. Similarly, we knew some native peoples objected to “biopiracy”—the harvesting of their tissues for use by pharmaceutical companies. Again, our roundtables pointed out that we did not know the extent to which this practice occurs. The papers by Jones and Barsh fill in part of that gap by identifying relevant genetic research projects, the funding sources of such research projects and the cell lines used. Other papers suggest tribal-specific approaches to genetic research and set out alternative means of protecting the intellectual property rights of native peoples using the current IPR regime.
Our workshops and roundtables generated a number of briefing papers, reports, and transcripts. We post these documents to our website as they are finalized so we encourage you to visit us regularly to view our latest offerings.