Applying lessons learned from the HeLa experience: making consent informative

NIH Director Francis Collins with members of the Lacks family. Collins posted this photo to his Twitter account @NIHdirector yesterday after announcing the historic agreement.

Yesterday the NIH announced that their director Francis Collins had personally worked with the Lacks family to give consent for the publication of the HeLa cell genome sequence. This agreement includes a working group to control access to the cells and requires crediting the Lacks family in any publication.

The HeLa cells have been widely used in research since they were originally obtained from a tumor biopsy in 1951 from a patient named Henrietta Lacks. According to a story in Nature, that cell line now turns up in more than 75,000 publications. The cell line has contributed to countless advances in science, but it was obtained without permission from Henrietta Lacks or her family. The New York Times has more details about the cells and their history in a story today.

Most recently, the DNA sequence of the HeLa cell line was published without the knowledge of the family. The family was understandably upset by the lack of consultation and in response the research team removed the genome data from public access. Dr. Collins intervened and worked with the family and researchers to come to agreement about how genetic information could be released to researchers. Here’s what Collins said about the agreement in his blog:

It’s most unfortunate that Ms. Lacks did not receive the thanks she deserved from researchers during her lifetime. However, I’m glad that we now have a chance to thank the Lacks family for continuing to share her enduring legacy with the biomedical research community. Their generosity extends to the millions of people who have benefited, or will benefit in the future, from research using HeLa cells.

This story is the latest chapter in the story of the HeLa line. Rebecca Skloot’s book The Immortal Life of Henrietta Lacks recounts the history of the line and the family’s ordeal. Ironically, the Lacks family has been supportive of research. Skloot documents a very moving account of a visit by family members to Christoph Lengauer’s lab at Johns Hopkins. The family members were provided the opportunity to learn about the research being conducted with HeLa cells and they were able to observe the cells under the microscope.

CIRM has benefited from these efforts. We are currently supporting an initiative to collect tissue samples from thousands of people with a range of incurable diseases and create reprogrammed iPS cells from those tissues (here’s more about that initiative). These cells will be a resource for scientists worldwide working to understand and treat diseases. Part of this initiative includes a consent process to make sure people who donate fully understand how their cells will be used. (This process is formally called informed consent.)

The informed consent process includes a form that identifies the purposes of the research and describes the way cells will be used. We are also developing education materials that will help potential donors quickly and easily understand the basic aspects of research that will be conducted with those cells. The end result of this collaboration with our grantees will be a process that is truly informative to donors.

The informed consent process can’t entirely eliminate all future questions on the part of the donor, but it does ensure that donors have a chance to understand how their cells will be used and what information will be made public—something Henrietta Lacks and her family never had.

Geoff Lomax

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