Thursday, August 8, 2013

Henrietta Lacks Revisited

When I first blogged about Henrietta Lacks a couple of years ago, I titled the blog "Right to Own Our Own Bodies". I'm on the road in Salt Lake City attending the Federation of Eastern European Family History Societies conference so this update post will be briefer than normal. However, this morning's news certainly warrants attention.

Several news outlets including The Guardian and Associated Press Francis S Collins, Director of the National Institutes of Health announced yesterday that an agreement had been reached with family members after six decades:

"Under the agreement, two family members will sit on a six-member committee that will regulate access to the genetic code.
"The main issue was the privacy concern and what information in the future might be revealed," David Lacks Jr., grandson of Henrietta Lacks, said at a news conference.
Jeri Lacks Whye, a granddaughter who lives in Baltimore, said: "In the past, the Lacks family has been left in the dark" about research stemming from HeLa cells. Now, "we are excited to be part of the important HeLa science to come."

Behind the scenes negotiations have been underway since March to reach this landmark arrangement. This follows on the heels of the Supreme Court decision in the Myriad Genomics case earlier this summer.

Finally some humanity is being used to guide this exploding new technology!

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