Last week, scientists announced they had sequenced the full genome of the most widely used human cell line in biology, the "HeLa" cells, and published the results on the web. But the descendents of the woman from whom the cells originated were never consulted before the genetic information was made public, and thus never gave their consent to its release.
Morning Edition's Renee Montagne spoke to Rebecca Skloot, author of the best-selling book The Immortal Life of Henrietta Lacks, which chronicles the cells and the family tied to them. Skloot also wrote an op-ed in Sunday's New York Times about the need for international standards to protect the privacy of genetic data.
Henrietta Lacks was a poor black tobacco farmer in southern Virginia. In 1951, she was diagnosed with cervical cancer. Her doctor, without telling her, took a little piece of her tumor to study it.
Lacks died soon afterward, but her cells kept growing and reproducing in the doctor's Johns Hopkins lab. As scientists recognized their surprising ability to grow indefinitely, the cells become hugely important to medical research. For the past 60 years, the HeLa cells have been used in experiments on topics as diverse as cloning, the effects of radiation, and the polio vaccine.
Lacks' family didn't find out about the immortal cells until the 1970s.
"It has been a long legacy within the family of 'research without consent,' and they've [experienced] quite a few privacy violations along the way," says Skloot.
Some of the HeLa genome has been available for years. The European researchers who sequenced the full genome initially claimed last week that no private medical information about Lacks or her descendents could come from the data they published online.
But right away other researchers began to refute that. They noted that although the cells have mutated, they still contain Henrietta's genes.
"To prove that point, some scientists took that genome and turned it into a [detailed] report on Henrietta and what her genes actually said, to illustrate, 'Yes, you can find very specific information about her,' " says Skloot.
For example, anyone looking at the genome could learn about Lacks' risk factors for some diseases like Alzheimer's, and also could learn about some non-disease traits like the color of her hair or eyes.
It's perfectly legal to publish someone else's genome online, but it does raise significant questions about privacy. Though Henrietta Lacks is no longer alive, releasing reports about her genetic information also invariably releases some information about the DNA of her descendents.
"We have more questions [about privacy] than answers at this point," says Skloot. "One of the questions that comes up is, 'Can you hide the parts of this genome that are Henrietta?' The answer seems to be no."
It's even relatively easy to identify people whose DNA has been posted anonymously, as researchers noted in the journal Science in January.
And right now, there are no regulations to protect families like the Lackses.
"Our regulations aren't covering the privacy questions that come up for people," says Skloot.
Skloot has been in touch with the Lacks family. She says they were shocked. Initially, they wanted the genome taken down from the Internet until they could review and understand what it meant and might reveal about them. (As Skloot reported in the Times, the European researchers have apologized and quietly removed the data from the web.)
But the family also wanted to know how the information in the genome could help society.
"They don't want to stop science," says Skloot. "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 that we can decide whether we want to give consent.' "
DAVID GREENE, HOST:
This is MORNING EDITION from NPR News. I'm David Greene.
RENEE MONTAGNE, HOST:
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. Transcript provided by NPR, Copyright NPR.