Sequencing Of HeLa Genome Revives Genetic Privacy Concerns : Shots - Health News Henrietta Lacks' family was never consulted before her genetic information was made public. Author Rebecca Skloot, who chronicled the story of her cells, says current regulations aren't covering the privacy questions that come up for people like the Lacks family.

Sequencing Of HeLa Genome Revives Genetic Privacy Concerns

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This is MORNING EDITION from NPR News. I'm David Greene.


And I'm Renee Montagne. There's a new chapter in the story of Henrietta Lacks. That name has come to be widely known, mainly because Lacks was the subject of the best-selling book "The Immortal Life of Henrietta Lacks." Here's author Rebecca Skloot.

REBECCA SKLOOT: Henrietta Lacks was a poor black tobacco farmer who grew up in southern Virginia and in 1951 she was diagnosed with cervical cancer. And she went to the doctor and, without telling her, her doctor just took a little piece of her tumor and put that in a dish.

MONTAGNE: Henrietta Lacks died soon after, but her cells did not. They kept growing and reproducing. It was a huge breakthrough for medicine. Scientists have used those cells, named HeLa cells, to explore cloning, do cancer research, help develop the polio vaccine and much more. The problem?

SKLOOT: She never knew the cells were live and her family didn't find out about them until the '70s so it's been this long kind of legacy within the family of research without consent. And it had quite a few privacy violations along the way.

MONTAGNE: Then last week another privacy violation to add to that list. Scientists announced they had sequenced the genome of HeLa cells and published the results on the Web, again without the family's consent. Rebecca Skloot wrote about it in Sunday's New York Times. She says the researchers who published the genetic information online claimed that no private medical information about Lacks or her descendants could come from the data.

SKLOOT: But that's actually not true and soon after this was published, a lot of scientists on Twitter started saying, whoa, wait a second. You know, yes, the cells have mutated but you can still find her genes in there. And to prove their point, some scientists actually took that genome and turned it into essentially a report on Henrietta and what her genes actually said. To illustrate, yes, you can find very specific information about her.

MONTAGNE: Give us an example of what one might really be able to find out about Henrietta Lacks.

SKLOOT: So a lot of people are familiar with companies like 23andMe, you know, where you can send in a little, you know, sample of your cheek cells and they'll give you a whole report that says you have a risk factor that may mean you're going to get Alzheimer's. Or it may mean you are at an increased likelihood of X or Y. But then also normal traits like, you know, what color eyes do you have? What's your hair color?

So there's a lot of specific stuff to health but also just to your personal sort of being.

MONTAGNE: This family, her descendants, again, have just seen very key information about their genetics be revealed for all to see online. I gather that that is perfectly legal. What kind of privacy protections would you say should be out there?

SKLOOT: There are a lot of big questions raised by this and people are still trying to figure it out. We have more questions than answers at this point. And one of the questions that comes up is can you hide the parts of this genome that are Henrietta and just do research on the parts that are more related to the cells. And the answer seems to be pretty clearly no.

And then there's also just questions of who do you consent? In the case of Henrietta Lacks, you know, she's obviously gone. Does it go to the next of kin, just like their medical records would? And right now there's just no clear regulations. There's not really any clear agreement yet. But given what we know now, it's very clear that our regulations aren't covering the privacy questions that come up for people.

MONTAGNE: And you've been in touch with the Lacks family throughout all of this in writing your book and also these recent revelations. How are they reacting?

SKLOOT: You know, the Lacks family was very shocked. Their first concern was we want it offline. You know, we want it offline until we can understand what it means, what it might reveal about us. And their second question was, how can this help society? So you know, they don't want to stop science. They don't want people to stop doing research on HeLa.

So they said take it offline and then we want to sit down and learn about this stuff so we can decide if we want to give consent.

MONTAGNE: Rebecca Skloot is the author of "The Immortal Life of Henrietta Lacks." She joined us from Chicago. Thanks very much.

SKLOOT: Thanks for having me.

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