Exploring Attitudes About Data Disclosure and Data-Sharing in Genomics Research

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DESCRIPTION (provided by applicant): Two major issues have garnered significant attention leading to the development of a range of policies regarding data disclosure and data-sharing in biomedical research. While the disclosure of data is relevant to all types of biomedical research, it has garnered particular attention with respect to genetics and genomics research due to some of the unique aspects of the data and the high public profile of the field. In general, most investigators do not provide access to data results for a number of reasons including time constraints, cost, and risk of harm due to the uncertain nature of many research results. Despite current evidence that research participants in clinical studies would like the option of obtaining research results even if of little clinical utility, the practice does not appear to be common. Similarly, data-sharing practices have expanded with the digital format of most genomics datasets. Whereas traditional methods of data-sharing include publication and presentations at professional meetings, genomic datasets are more amenable to online data-sharing through public and private databases, which may heighten participant concerns about privacy and genetic discrimination. Indeed, large-scale projects such as the Human Genome Project and the HapMap have developed and implemented open access policies. Little research has been conducted to ascertain the public's attitudes and understanding of these important issues. This proposal aims to engage members of the public, particularly those from minority communities, through a series of focus groups to increase our understanding of public attitudes about data disclosure and data-sharing in genomics research and the potential impact current policies and practices may have on study recruitment rates. Since many of the current public policies do not appear to have sought input from the public regarding these issues, these data will help inform the development of appropriate data disclosure and data-sharing policies and serve as a launching point for further exploration and analysis of public attitudes on issues relevant to genomics research. As public health research in the fields of genetics and genomics continues to expand, it will be critical to consider the public attitudes in the development of new policies to ensure the respect, safety and interest of future research participants. The success of large-scale genomics research initiatives will depend on the support and participation of the public and therefore, their views are critically important to obtain.