CHAPEL HILL - Investigating ethical issues surrounding recent and upcoming genetic discoveries will be the goal of a new $975,000 National Human Genome Research Institute award to University of North Carolina at Chapel Hill faculty members.
Dr. Gail Henderson and lawyer Nancy King, both professors of social medicine at the UNC-CH School of Medicine, will lead the three-year effort, sponsored by the institute's Ethical, Legal and Social Implications of the Human Genome Project program.
"When Dr. James Watson set up the Human Genome Project, he required that a certain percentage of its budget be set aside to fund studies of the genome project's ethical, legal and social implications since it raised so many questions," Henderson said. "Our work relates to how people understand genetic research in terms of the consent process.
"We're planning to investigate how benefits are described and understood in gene transfer studies, which just about everybody calls gene therapy," she said. "People think of these studies as therapy but they are not at all. They are really just early research that we hope will eventually lead to better treatments."
The Human Genome Project is a massive effort nearing completion to catalog all human genes.
Henderson, King and colleagues will conduct telephone interviews with investigators, research subjects, study coordinators and members of institutional review boards in up to 50 of the most recent gene transfer studies across the United States. The review boards, or IRBs, oversee human experimentation at each institution.
"The ultimate goal is to try and understand how people develop ideas and beliefs about possible benefits from these early research studies," Henderson said. "In some of this research there is a slight possibility of benefit, but in most it's extremely unlikely or absolutely not possible directly."