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  • Commission Calls for Greater Protections of Patient Data in Genome Sequencing

    To realize the promise of whole genome sequencing, scientists and clinicians must have access to data from large numbers of people who are willing to share their private information, say authors of a report issued yesterday by the Presidential Commission for the Study of Bioethical Issues. "This in turn requires public trust that any whole genome sequence data shared by individuals with clinicians and researchers will be adequately protected," they write.

    The commission's investigation found that current governance and oversight of genetic and genomic data varies in its protection of individuals from the risks associated with sharing their whole genome sequence data and information. In particular, a great degree of variation exists in what protections states afford to their citizens regarding the collection and use of genetic data.

    To improve current practices and help ensure privacy and security as the field of genomics advances, the commission offers 12 recommendations, including proposals that clinicians and researchers use robust and understandable informed consent procedures and engage in productive exchanges of those collections of genomic information that are based on such consent procedures. The commission recommends that the federal government facilitate broad public access to the important clinical advances that result from whole genome sequencing. The commission also urges federal and state governments to ensure a consistent floor of individual privacy protections covering whole genome sequence data across state lines, regardless of how the data were obtained.

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