Commission calls for genomic privacy

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A US bioethics panel is calling for privacy protection in a new report released in October. The Presidential Commission for the Study of Bioethical Issues (PCSBI) lays out a dozen new recommendations in its report “Privacy and Progress in Whole Genome Sequencing.” The overall goal is to strike a balance between encouraging genomic research to benefit human health, on the one hand, and protecting the privacy of those whose genome are being sequenced, on the other. The Commission stops short of recommending national standards, calling instead on federal and state officials to work together to “assure a consistent floor to protect privacy,” says PCSBI chair Amy Gutmann, who is president of the University of Pennsylvania. About half the states have laws that already provide “some protection.” Even if the US Congress were to set national standards, however, privacy protections are likely to remain a jumble at the international level, where genomic sequence data sharing is expected to expand. And as the cost of sequencing drops, it is “not a fantasy” to imagine organizations “surreptitiously” taking saliva or other specimens to determine DNA sequences and then using such information to exclude some individuals and perhaps also their family members from life or health insurance coverage, according to Gutmann. The commission recommends “fully informed consent” for all human genomic sequencing, thus excluding surreptitious sequencing and thereby protecting citizens whenever whole-genomic sequencing is undertaken, she says.

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Fox, J. Commission calls for genomic privacy. Nat Biotechnol 30, 1017 (2012). https://doi.org/10.1038/nbt1112-1017b

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