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Politicians will post their genetic test results online just as they now release their medical records. Prudent team owners will insist on genetic tests in addition to comprehensive physicals before signing up athletes to multi-million-dollar contracts. Couples contemplating children will eagerly seek out genetic information to find out possible risks. Celebrities will sell bits of their DNA along with their full genetic readouts online to fans. Personal enemies may well try to undermine one another by posting ill-gotten genetic information online, but that will surely be less damaging than run-of-the-mill gossip is today.
In November 2012 the Presidential Commission for the Study of Bioethical Issues issued a report, Privacy and Progress in Whole Genome Sequencing, which analyzed issues relating to genetic privacy. The commission recommended that states and the federal government establish a consistent set of standards protecting genetic privacy, similar to those instituted in 1996 by the Health Insurance Portability and Accountability Act (HIPAA), which promulgated rules to protect individuals’ medical records and other personal health information. Those policies, the commission stressed, “should protect individual privacy by prohibiting unauthorized whole genome sequencing without the consent of the individual from whom the sample came.”
The prospect of learning about one’s risk of dire disease in the morning headlines does seem unsavory, but at the same time, genetic information is not an especially vital or dangerous category of knowledge. Such privacy regulations will needlessly reinforce unscientific notions of genetic exceptionalism among the public.
And since the sorts of rules recommended by the commission have the habit of metastasizing into malignant bureaucracies—the paperwork requirements of HIPAA are widely considered to be unnecessarily burdensome, wasting millions of man hours, costing tens of billions, and slowing the pace of medical research—it is highly likely that we will regret adopting such a prohibition sooner rather than later.