This article has been corrected from a previous version, which incorrectly linked the public meetings to the NHGRI's Genes, Environment, and Health Initiative. The proposed large cohort study under discussion has not been funded yet.
NEW YORK (GenomeWeb News) – The National Human Genome Research Institute wants to know how to get thousands of Americans from a wide swath of social, regional, economical, and ethnic groups to participate in a series of public meetings related to a proposed large cohort study on the role of genes and environment in health.
As a measure to determine the public’s attitude on volunteering, NHGRI turned to the Genetics and Public Policy Center at the Berman Bioethics Institute at Johns Hopkins University to do a pilot study on how to engage the public in large cohort, long-term studies on genes and the environment. Under part of this effort, GPPC will run soundings of public concerns by conducting a series of town hall-style public meetings this spring in five cities around the country.
Working under a $2 million NHGRI grant issued in 2006, the GPPC will conduct meetings of around 200 members of communities in Kansas City, Mo.; Jackson, Miss.; Middletown and Philadelphia, Pa.; Phoenix Ariz.; and Portland, Oregon.
Large-scale cohort studies could present special problems for individuals, said the GPPC’s Director of Communications, Rich Borchelt.
“What we would like is a public deliberation that leads to a consensus on just what are showstoppers for this kind of research,” Borchelt told GenomeWeb Daily News Monday.
“What are the policies that you can put in place, and what is it that people want?” Borchelt asked. Potential volunteers may have a wide array of questions or concerns, he said, ticking off a theoretical list: How much privacy do people need? How much time will they be willing to commit for a study that could last over a decade or more? Do they want compensation with healthcare? As we are discussing genetic testing in a new age, what privacy concerns make people afraid to become involved? Will people want their results if they are found to have medical or genetic issues and, if they do, how does the study handle all of that information?
The NHGRI anticipated such issues, and sought the GPPC to help sort out what people want, and what it is prepared to do about it. In the RFA that it awarded to the GPPC, NHGRI said it expected to raise concerns about the use of data, privacy protection, open-ended consent, and other concerns.
The institute also guessed it would need to tailor some of its work to communities with special needs, optimize approaches to identifying and contacting family members, to maintain a dialog with participants in terms of the studies’ goals and processes, as well as other considerations.