The National Human Genome Research Institute (NHGRI), one of the National Institutes of Health, is awarding $4.7 million to the University of Washington to address the ethical, legal and social implications (ELSI) of genomic research in minority communities.
The grant to the School of Medicine’s Department of Medical History and Ethics will be used to study how genomic research can be applied to improve health care and meet needs in communities that are less likely to have access to advances in technology and medicine.
The principal investigator is Dr. Wylie Burke, chair of the Department of Medical History and Ethics in the UW School of Medicine. Dr. Patricia Kuszler, the associate dean for research and faculty development at the UW School of Law, is the co-principal investigator.
“The challenge of utilizing genomic research in medical care is to insure that the medically underserved, including minority, low income and rural populations will benefit from the advances in genomic technology,” Burke says. “At the same time, we need to assure that these groups will not suffer disadvantages due to genetic discrimination.”
The UW Center for Excellence in ELSI Research is a collaborative prject that includes the schools of Medicine, Law, Pharmacy, Public Health and Community Medicine, along with participants from other universities and scientists from the Fred Hutchinson Cancer Research Center.
“The center will address the need to define criteria for clinically and socially appropriate applications of genomic health care, as well as the need to reduce health care disparities among the medically underserved,” Burke said. “We’ll be using interdisciplinary collaboration as well as community-based participatory research to achieve these goals.”
Kuszler notes, “These traditionally underserved populations often perceive themselves to be at increased risk of stigmatization and discrimination as a result of misuse of genetic information and lack of access to beneficial medical interventions. These concerns are particularly marked in Native American and other minority communities, who have been victimized in the past.”
Community-based participatory research models emphasize participation by the community in all aspects of a project, including study design and implementation, collection and analysis of data, formulation of conclusions and recommendations and publication of results. Some topics for potential exploration using this method include the perspectives of members of different communities concerning their pressing health care needs, their attitudes toward genomics, whether they perceive any benefit associated with genetic testing or other applications of genomic technology, and their perceptions regarding the personal and social implications of genetic information.
The UW Center of Excellence in ELSI Research is funded by the National Human Genome Research Institute’s ELSI program. The national program was established in 1990 as an integral part of the Human Genome Project, to foster basic and applied research and support education and outreach. The ELSI program at NHGRI funds and manages studies related to the ethical, legal and social implications of genetic and genomic research and supports workshops, research meetings and policy conferences on these topics. The ELSI program at NHGRI is the largest supporter nationally of ELSI research.