We have more questions than answers at this point. SKLOOT: There are a lot of big questions raised by this and people are still trying to figure it out. What kind of privacy protections would you say should be out there? MONTAGNE: This family, her descendants, again, have just seen very key information about their genetics be revealed for all to see online. So there's a lot of specific stuff to health but also just to your personal sort of being. But then also normal traits like, you know, what color eyes do you have? What's your hair color? Or it may mean you are at an increased likelihood of X or Y. 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. MONTAGNE: Give us an example of what one might really be able to find out about Henrietta Lacks. To illustrate, yes, you can find very specific information about her. 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. You know, yes, the cells have mutated but you can still find her genes in there. 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. 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. Rebecca Skloot wrote about it in Sunday's New York Times. Scientists announced they had sequenced the genome of HeLa cells and published the results on the Web, again without the family's consent. MONTAGNE: Then last week another privacy violation to add to that list. And it had quite a few privacy violations along the way. 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. Scientists have used those cells, named HeLa cells, to explore cloning, do cancer research, help develop the polio vaccine and much more. MONTAGNE: Henrietta Lacks died soon after, but her cells did not. 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. 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. 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. There's a new chapter in the story of Henrietta Lacks.
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