The Author Of “The Immortal LIfe Of Henrietta Lacks” Offers Her Take — On Revising Consents For Patients’ Cell/Tissue Research

I was completely captivated by the way Rebecca Skloot crafted her narrative of the life (and immortal continuance, in the bio-sciences) of Henrietta Lacks, some five years ago, now. [Follow this link if you need the back-story, here.]

So. . . you might well-imagine that I would listen attentively to Ms. Skloot’s perspective on the now proposed sweeping changes to the (clearly antiquated) rules under which the HeLa cells were harvested from Ms. Lacks without consent, so long ago. To be certain, a complex set of partially conflicting policy considerations hangs in the balance, but this does not excuse us from being quite careful and circumspect about peoples’ DNA and tissue samples, even when anonymized. Here is a bit from Ms. Skloot’s opinion piece in the New York Times — but do go read it all:

. . . .The United States government recently proposed sweeping revisions to the Federal Policy for Protection of Human Subjects, or the Common Rule, which governs research on humans, tissues and genetic material. These changes will determine the content of consent forms for clinical trials, if and how your medical and genetic information can be used, how your privacy will be protected, and more. The most controversial change would require scientists to get consent for research on all biospecimens, even anonymous ones. . . .

The original Common Rule was written decades before anyone imagined what we can now learn from biospecimens. Case in point: The Common Rule doesn’t require consent for “non-identifiable” samples, but scientists have proven it’s possible to “re-identify” anonymous samples using DNA and publicly available information. Nothing prohibits this. There is widespread agreement that current regulations are outdated, but little consensus on a fix. Much debate centers on what the public may or may not want done with their tissues, and whether that should even be a factor in policy making. What’s missing is the actual public.

The proposed changes are open for public comment on a government website through January 6. . . .

Do think about making a thoughtful public comment. Truly. Do. And, welcome to 2016.


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