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Last month, the National Institutes of Health (NIH) published a draft version of its new genomic data sharing policy, along with a request for public comment. The draft policy parallels some of the concepts and recommendations discussed in the Presidential Commission for the Study of Bioethical Issues’ (Bioethics Commission) 2012 report: Privacy and Progress in Whole Genome Sequencing. The Bioethics Commission is pleased to note that several of its recommendations and core ethical principles are shared by NIH and other law and policymakers.
The Bioethics Commission’s recommends in Privacy and Progress (Recommendation 1.1) that “Funders of whole genome sequencing research… should maintain or establish clear policies defining acceptable access to and permissible uses of whole genome sequence data.” The NIH draft policy does just that: it defines the requirements for access to and use of genomic data, and sets forth the guiding ethical principles for the responsible use of such data.
The NIH draft policy states its purpose as encouraging broad sharing of genomic data, in order to facilitate important advancements in medicine, while also ensuring...
The Bioethics Commission’s recommends in Privacy and Progress (Recommendation 1.1) that “Funders of whole genome sequencing research… should maintain or establish clear policies defining acceptable access to and permissible uses of whole genome sequence data.” The NIH draft policy does just that: it defines the requirements for access to and use of genomic data, and sets forth the guiding ethical principles for the responsible use of such data.
The NIH draft policy states its purpose as encouraging broad sharing of genomic data, in order to facilitate important advancements in medicine, while also ensuring...
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