NEW YORK (GenomeWeb News) – The Genetics and Public Policy Center at Johns Hopkins University will use a grant of roughly $1.6 million from the National Human Genome Research Institute to study public attitudes about the possibility of the US conducting a large population-based study of the relationship between genes and the environment in human health.
The two-year research program will expand the GPPC's initial Public Consultation Project, also funded by NHGRI, and it will closely study public attitudes about what benefits may come from participating in research. The center also will study attitudes about the relationship between researchers and subjects, and perspectives on disclosing, receiving, and using information from large cohort genetic studies.
The aim is to understand the expectations of participants in a large, population-based study, which would likely involve the participation of thousands of volunteers who would be followed for many years to understand the environmental and genetic contributors to common illnesses.
"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," GPPC Deputy Director Joan Scott, said in a statement.
The center used a grant of $2 million from NHGRI in 2006 to assess whether US residents would want to participate in these studies and what design criteria people may be most interested in when deciding whether to participate. That program "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," said GPPC.