Settlement reached with Henrietta Lacks’ Family

Henrietta Lacks died in 1951, but some cervical cancer cells removed from her body without her knowledge or consent live on today, and have become key a key tool in genetic research. The NIH and the Lacks family have reached a settlement on how the so-called HeLa cell line can be used in medical research. The settlement does not include any financial payment to the family, but provides for members of the Lacks family to be involved in deciding who may use the HeLa cells for research in the future.

There were a variety of stories earlier today about the settlement, and many seemed to imply that the Lacks family controlled who could use the cells, which turns out to not be true. I could not find the actual settlement or details of how the settlement would all work until this evening, I think because the site was embargoed due to having an in press publication on it that was embargoed (but I may be wrong and just missed it). It is all available now, in any event.

Here is the NIH web site which contains the links noted below, as well as others..

  • Six member committee that includes 2 members of the Lacks family that makes recommendations to the NIH Director regarding the granting/denial of access to use the HeLa cells in research. However, the final decision rests with the Director of NIH.
  • Acknowledgement statement that must appear on any paper using the HeLa cell line.
  • Instructions for requesting to use the HeLa cell line.

An interesting case, with many avenues for discussion and debate.

About Don Taylor
Professor of Public Policy (with appointments in Business, Nursing, Community and Family Medicine, and the Duke Clinical Research Institute), and Chair of the Academic Council at Duke University . I am one of the founding faculty of the Margolis Center for Health Policy. My research focuses on improving care for persons who are dying, and I am co-PI of a CMMI award in Community Based Palliative Care. I teach both undergrads and grad students at Duke. On twitter @donaldhtaylorjr

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