Who owns HeLa?

We have mentioned Henrietta Lacks a few times in class, the individual whose cells have done more than anyone else’s in the advancement of modern medicine.  The HeLa cell line, the first “immortal” cell line ever developed, has been used to develop the world’s most important vaccines and cancer medications, as well as spurring advances in gene mapping, cloning and IVF.  But all of this was done without her or her family’s consent, and her family was unaware of the cell line until 20 years after Lacks’s death.  Now HeLa has been sequenced, and her genetic information published- once again, without her family’s permission.  This is legal, but is it ethical?

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Rebecca Skloot, whose book brought the story of Henrietta Lacks to popular attention a few years ago, has written a nice editorial about just how problematic the publication of HeLa is, and how poorly the law has kept up with the implications of advancements in genomic technology.  If HeLa shows a predisposition toward Alzheimer’s, for example, this may have repercussions for the life insurance her descendants can get.

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2 thoughts on “Who owns HeLa?

  1. Shouldn’t this fall under a confidentiality agreement of some kind? What about HIPPA law, would it apply? Regardless of the Henrietta Lack having passed that should not make her information public. I cant help but wondering if it was financial information, if there would be a larger debate and issue surrounding the rights. The family should at the very least have been consulted because it is their genetic code as well. Issues with insurance could be frustrating, but what bugs me the most is the lack of privacy. Doctors and scientists should not have the right to anyone’s personal information.

  2. Pingback: Questions around personal genomics | Medical Anthropology

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