Washington, DC - August 26, 2009 - The Genetics and Public Policy Center today announced that it was awarded approximately $1.6 million by the National Human Genome Research Institute (NHGRI) to study public attitudes about a possible large U.S. population-based study examining the roles of genes and environment in human health.
The new research, to be carried out over two years, will build on the Center's recently-completed initial Public Consultation Project, which also was funded by NHGRI. The new project will delve further into public attitudes about the expected benefits of participating in research, the nature of the relationship between researchers and research subjects, and perspectives on disclosing, receiving, and using information collected or discovered as part of large cohort genetic research.
NHGRI, in collaboration with other parts of the National Institutes of Health, has discussed the possibility of launching a large, population-based study of the roles of genes, environment, and lifestyle in health. Such studies are already underway in several other countries. Although funding for such an endeavor has not been identified, carefully outlining and considering the goals and key design aspects of such studies was deemed of high scientific importance.
A large, population-based study likely would involve the participation of hundreds of thousands of U.S. volunteers, who would be followed for a period of many years to ascertain and quantify the major environmental and genetic contributors to common illnesses. Researchers would analyze the relationships of common complex diseases with genetic risk factors; environmental exposures, such as smoking and dietary intake; and the health care experiences of a wide cross-section of people in the United States. The study would also provide the opportunity to dissect some of the causes of health disparities between different groups.
To help assess whether U.S. residents would participate in such studies, as well as what design criteria people might consider most when deciding whether to participate, NHGRI awarded the Center $2 million in 2006 to conduct focus groups, community leader interviews, town hall meetings, and a national Web-based survey. The initial Public Consultation Project yielded rich data about public attitudes on such issues as privacy, return of individual research results to participants, and whether and how children should be included in human subjects research. These results have been presented to NHGRI for planning purposes and published in the literature.
"We're looking forward to continuing to investigate public attitudes toward large-cohort research," said Center Deputy Director Joan Scott, a Principal Investigator on the project. "Our findings will not only inform the design of a study of this type if it goes forward, but have important implications for human subjects research generally, particularly the large number of population-based genetic studies already planned or underway."
The new project will begin later this year with a series of focus groups. The results of the focus groups will inform the design of a Web-based survey to be launched early in 2010.
Murphy, J., J. Scott, D. Kaufman, G. Geller, L. LeRoy, and K. Hudson. 2008. Public Expectations for Return of Results from Large-Cohort Genetic Research. American Journal of Bioethics 8: 36-43.
Kaufman, D., J. Murphy, J. Scott, and K. Hudson. 2008. Subjects matter: a survey of public opinions about a large cohort study. Genetics in Medicine 10: 831-839.
Kaufman, D., G. Geller, L. LeRoy, J. Murphy, J. Scott, and K. Hudson. 2008. Ethical implications of including children in a large biobank for genetic-epidemiologic research: A qualitative study of public opinion. American Journal of Medical Genetics Part C: Seminars in Medical Genetics 148C: 31-39.
Williams, S., J. Scott, J. Murphy, D. Kaufman, R. Borchelt, and K. Hudson. The Genetic Town Hall: Public Opinion About Research on Genes, Environment, and Health. Washington, DC: Genetics and Public Policy Center, 2009.
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