With the arrival of the $1000 genome looming, the Presidential Commission for the Study of Bioethical Issues has just released a statement in which it recognizes that although inexpensive whole genome sequencing “holds enormous promise for human health and medicine,” there is “potential for misuse of this very personal data.”
No kidding. Genetic privacy issues have been the focus of California court cases and legislative initiatives in recent years. In fact, about a year and a half ago, California officials seemed to have resolved two hot topics in favor of more stringent protections for individuals who had DNA samples taken without giving informed consent. First, a California Court of Appeal struck down as unconstitutional the state’s 2004 amendment requiring felony arrestees to provide their DNA to police.
Second, Governor Brown signed into law Senator Alex Padilla’s (D-Pacoima) bill which prohibits “surreptitious sequencing,” i.e. sending someone else’s cigarette butt or used tissue to a lab for genetic analysis without his or her knowledge. The law also proscribes genetic discrimination in housing, employment, education, public accommodations, health insurance, life insurance, mortgage lending, and elections – a major expansion over the current federal law (the Genetic Information Nondiscrimination Act, or GINA) which prohibits discrimination only in the areas of health insurance and employment.
And now it seems the President’s bioethics commission is pushing the feds to catch up with California.
On the legislative side of the DNA privacy issue, the Presidential Commission has recommended that, just as the California legislature has done, Congress (and other states’ legislatures) should “protect individual privacy by prohibiting unauthorized whole genome sequencing without the consent of the individual from whom the sample came.”
In the courts, the constitutionality of the California felony arrestee DNA collection law is currently being reargued. The Ninth Circuit just held an en banc hearing and will soon decide for itself whether the California law is unconstitutional. Why re-scrutinize the same issues in a different court? Because federal courts are not required to follow state courts’ interpretations of federal law, and also because the California Supreme Court granted review of the case last year, thereby calling the issues into question again.
Will the bioethics commission’s opinion about the potential misuses of genetic information push federal judges and legislators to follow in the footsteps of their California counterparts? We won’t know for some time. But what we know now is that the “nation’s leaders in medicine, science, ethics, religion, law, and engineering” agree that the information embedded in individuals’ DNA is sensitive and vulnerable enough under current laws that it should be handed over only after informed consent has been obtained.
Previously on Biopolitical Times:
Posted in California, Emily Stehr's Blog Posts, Public Opinion, Sequencing & Genomics, US Federal
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