NIH Issues Guidelines For HeLa Cell Genome Data

The 2010 bestseller The Immortal Life of Henrietta Lacks highlighted ethical controversies surrounding scientists' use of HeLa cells. The cells are descended from a tumor taken without consent from Henrietta Lacks, a poor black woman who died in 1951. Ethical concerns resurfaced with the publication of the HeLa cell's genome. The National Institutes of Health has now issued guidelines. For an explanation, Linda Wertheimer talks to NIH director Francis Collins.

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RENEE MONTAGNE, HOST:

It's MORNING EDITION from NPR News. Good morning, I'm Renee Montagne.

LINDA WERTHEIMER, HOST:

And I'm Linda Wertheimer.

In 1951, a poor black woman named Henrietta Lacks died of cervical cancer in Baltimore. Before her death, doctors removed a portion of her tumor and cultured it without her or her family's knowledge.

MONTAGNE: The tissue sample gave rise to a cancer cell line that can grow endlessly. And over the decades these HeLa cells have been used to research almost every disease. The ethical problems posed by the use of HeLa cells were laid out in the 2010 best-seller "The Immortal Life of Henrietta Lacks."

WERTHEIMER: Controversy surfaced again this year when German researchers sequenced and then published the HeLa cells' genome, again without the family's knowledge. Now more than 60 years later, the National Institutes of Health is issuing guidelines for the use of HeLa's cells, and hence Henrietta Lacks' genetic information.

Dr. Francis Collins, director of the NIH, joined us to talk about the guidelines. Dr. Collins, thank you for doing this.

DR. FRANCIS COLLINS: Well, thank you for raising this topic to your audience.

WERTHEIMER: Could you to explain to me what the genome of those endlessly multiplying cancer cells can tell us about Henrietta Lacks, or potentially her descendants. Are there privacy issues here?

COLLINS: There certainly are. While those cancer cells have many changes in them that cause these cells to grow immortal in their cancer circumstance, they also contain within them the original information that Henrietta was born with. All of us carry various hereditary risks for disease. And so, an enterprising effort to try to see what might have been represented in Henrietta's DNA at the time she was born could have implications for family members who are widely and publicly known and who, therefore, potentially have their privacy at risk by the complete open publication of this DNA sequence.

WERTHEIMER: What would researchers use the information to do? I mean, leaving out the Lacks family for the moment, why do they want it?

COLLINS: HeLa cells are the most widely used cell line ever. These cells have been used for all manner of important medical advances, including such things as developing the polio vaccine, or understanding the nitty-gritty of how it is that genes turn on or off. And so, researchers are very interested in being able to have access to the complete DNA instruction book that drives these cells in order to interpret their experiments.

WERTHEIMER: Now, soon after German researchers published the genome of HeLa cells, the controversy erupted, they took the genome information offline. How would researchers get access to it under your guidelines?

COLLINS: Well, this was a fascinating and fairly unprecedented circumstance, where you could see a collision of deeply held fundamental principles in research; one being the protection of research participants - and in this case, the family - but also the desire to share research data. So how could we achieve an outcome that preserved both of those principles?

After many conversations with the Lacks family, which I was personally involved in and which were fascinating and fundamentally consciousness-raising for all of us involved, the ultimate decision supported unanimously by the family was that the sequence could be made available but in a form where there was a need for researchers who wish to have access to it, to provide information about what their research plans were. And to have a group, including two members of the Lacks family, review those requests to be sure they were consistent with the best principles of biomedical research.

WERTHEIMER: Well now, one of the things that I don't understand is that if the immortal cells of Henrietta Lacks are available - so widely available that they're in almost every important medical lab - why couldn't somebody else just do their own genome?

COLLINS: Well, you're quite right, that with current technology it would be possible for somebody who wished to get around this circumstance to reproduce the sequence. We are strongly discouraging that and we simply will exhort researchers to do the right thing in this situation, respect the wishes of the family and not seek to go around this decision.

WERTHEIMER: Dr. Francis Collins is a physician and geneticist who now serves as director of the National Institutes of Health.

Dr. Collins, thank you very much.

COLLINS: Thank you, it's been a pleasure.

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