Public Expectations for Return of Results from Large-Cohort Genetic Research

Abstract

The National Institutes of Health and other federal health agencies are considering establishing a national biobank to study the roles of genes and environment in human health. A preliminary public engagement study was conducted to assess public attitudes and concerns about the proposed biobank, including the expectations for return of individual research results. A total of 141 adults of different ages, incomes, genders, ethnicities, and races participated in 16 focus groups in six locations across the country. Focus group participants voiced a strong desire to be able to access individual research results. Recognizing the wide range of possible research results from a large cohort study, they repeatedly and spontaneously suggested that cohort study participants be given ongoing choices as to which results they received.

Keywords:

• Results
• biobank
• engagement
• genetics
• public opinion
• focus groups
• cohort study

Acknowledgments

The project was supported by Grant Number UG1HG004206 from the National Human Genome Research Institute. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Human Genome Research Institute or the National Institutes of Health. The authors gratefully acknowledge the contributions of Rick Borchelt and Shawna Williams of the Genetics and Public Policy Center, Johns Hopkins University, and of BakedMedia Inc. of Owings, MD in developing audiovisual materials for focus group participants. The authors also would like to thank the focus group participants and the Citizen Advisory Panelists, as well as Sandy Hoffman of the George W. Comstock Center for Public Health Research and Prevention in Hagerstown, MD.