A big win for consent, privacy, and genome data

The family of Henrietta Lacks — a woman whose cervical cancer cells were harvested and used in scientific research for decades without her knowledge or consent — will now play a role in deciding who has access to the Lacks' cell genome data, and for what purposes. There are loopholes in the new system. For instance, the agreement only applies to scientists who receive National Institutes of Health funding. And the genome of the cells has been sequenced so many times, at this point, that anybody who wasn't NIH funded and didn't want to voluntarily abide by the agreement essentially wouldn't have to.

But it is a big step forward, both for the Lacks family (whose own genetic information is contained in those genome sequences) and for the idea that human genetic information belongs to the people it comes from — not to whoever happens to sequence it.

The happy selfie posted here features NIH director Francis Collins posing with some of Henrietta Lacks' descendants after the agreement was announced.

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