Abstract

Genome-wide association studies raise important ethical and regulatory issues. This is particularly true of the current move toward broad sharing of genomic and phenotypic data. Our survey study examined the opinions of professionals involved in human subjects protection regarding genetic research review. The majority indicated that it is important for their institutional review board to offer guidance about developing and using a data repository or biobank that includes genetic data, and also about sharing this data with other investigators. Only one-third of respondents reported that the National Institutes of Health policy regarding data sharing among researchers in genome-wide association studies is clear. Another third answered that they did not know whether this policy is clear. Findings from this study suggest a need for increased education for IRB professionals regarding the existing data sharing policy, collaboration among IRB professionals and researchers to define best practices, and further empirical research into prospective research participants’ information needs and preferences in the context of wide data sharing.