$2M to be used for town hall meetings, surveys, and focus groups.
The National Human Genome Research Institute (NHGRI) has awarded $2 million to the Genetics and Public Policy Center of the Berman Bioethics Institute at Johns Hopkins University to conduct a public discussion about potential U.S. population-based studies examining the roles of genes and environment in human health.

“Data from the Human Genome Project, a better understanding of human genetic variation, and major advances in genetic and environmental technologies have provided an unprecedented opportunity to begin contemplating how large, population-based studies might be designed,” explains NHGRI director Francis S. Collins, M.D., Ph.D.

“Such research could help unravel the complex genetic and environmental factors that contribute to common diseases, such as cancer and heart disease. However, before we even think of moving forward with such a major national enterprise, it is imperative that we begin a dialogue with the American public. This grant opens the door to that discussion.”

As part of this two-year pilot project, the Washington, D.C.-based Genetics and Public Policy Center will obtain input on issues related to large, population-based studies through a series of focus groups. The center plans to carry out a national web-based survey of 4,000 individuals.

In 2005, NHGRI, in collaboration with other NIH institutes, commissioned a group of experts in genetics, epidemiology, biostatistics, and ethical, legal, and social issues to examine the scientific rationale and the logistical and technical challenges of such a study of genes, environment, and health in the U.S.

The trial likely would involve the participation of hundreds of thousands of U.S. volunteers, who would be followed over many years to ascertain and quantify the major environmental and genetic contributors to common illnesses. Researchers would analyze genetic risk factors, environmental exposures, such as smoking and dietary intake, and the health-care experiences of a wide cross-section of people. The study would also provide the opportunity to dissect some of the causes of health disparities between different groups.

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