NUgene Public Attitudes Study Accepted for Publication
NUgene’s study of public attitudes toward sharing patients’ genetic information among researchers has been accepted for publication in the journal Public Health Genomics.
The data come from a series of focus groups conducted by NUgene and funded as part of their Electronic Medical Records and Genomics Network (eMERGE) grant from the National Human Genome Research Institute. Led by Maureen Smith, clinical director of the NUgene project, Wendy Wolf, director of the NUgene Project, and Amy Lemke, research assistant professor in the Center for Genetic Medicine, it is the first of a three-phased approach to community consultation about data sharing and genetic research.
A total of six focus groups were conducted, three made up of participants in the NUgene Project and three comprised of people from the Chicago area. All groups were asked the same questions regarding how they felt about genetic research, the sharing of genetic research data, and what role, if any, the government should play in protecting the privacy of genetic research participants.
Responses from all the focus group participants were analyzed for common themes. Participants expressed both positive and negative reasons for participating in genetic research, but most indicated that they would consider participating in genetic research to “help others.” For most people, the biggest influencing factor about whether to participate in a study was trusting the organization conducting the research.
Discussing the issue of trust led many to express a lack of trust in our government to oversee genetic research data. Many participants voiced that they would want to see transparency from the government with regard to their data-sharing and monitoring policies. They also expressed the need for more culturally sensitive public education about genetic research, noting this education must be tailored to specific communities.
This is one of the first studies looking at the public’s view of the US government’s genetic data-sharing policy, which was recently developed by the National Institutes of Health. The policy recommends that investigators conducting genome-wide association studies deposit data from their research into a government controlled data-base called dbGaP. The database allows limited access by approved investigators to view demographic and clinical information about research participants as well as research results. Researchers hope dbGaP and the guidelines established by this initiative will make sharing genetic information easier and more straightforward, facilitating larger and more comprehensive genetic studies.
