Consider the dilemma of the scientist who must choose between hundreds of potential research subjectsall desperate to participate in a study testing a promising new treatment for their terminal cancer. What criteria determines who is accepted? Who decides?
Or the scientist who discovers that one of her now-healthy research subjects has a good chance of developing a devastating neurological condition that will be passed on to her children. Should the young woman be notified? Does her fiancee have the right to know, as well?
Unlike most researchers conducting basic academic research, scientists working in the field of human genetics at the Medical Center are often faced with questions like thesequestions with troubling ethical and serious legal ramifications. To help answer these difficult questions, they turn to the faculty, staff and community experts who volunteer to serve on the U-Ms Genome Ethics Committee.
The scientific, ethical and policy issues addressed by the Genome Ethics Committee were discussed at an Aug. 29 briefing for about 20 legislators and policy-makers at the Medical Center. Convened in 1991 by George Zuidema, then-vice provost for medical affairs, the 42-member committee addresses all ethical and legal concerns associated with genetics research at the Human Genome Center and clinical applications at the Medical Center.
The U-M is the first research-oriented university to organize a committee devoted to societal goals and values related to genetics research, said Toby Citrin, director of community and government relations at the School of Public Health, who chairs the committee.
Organized into five subcommittees, the Genome Ethics Committee provides advice to clinicians and basic scientists; acts as a bridge to the general public; advises policy-makers on laws, professional standards and policies related to genetics; and stimulates research on the ethical and legal implications of the Human Genome Projecta federally-funded research program to identify and map all human genes by the year 2005.
Our hope is that by giving the public an advance look at whats around the corner and providing information on the potential benefits and harms of genetic research, we can improve public policy before a crisis occurs, Citrin said.