The story of Henrietta Lacks is one of biology's darkest moments: In 1951, Lacks went to Johns Hopkins Hospital for cervical cancer treatment. Cells that were taken during her biopsy were then cultured and have been used in labs around the world for decades — entirely without Lacks' knowledge or consent. The HeLa cell line was a crucial factor in the development of the first polio vaccine and cell cloning technology, but it's also a devastating reminder of the way that even our most trusted institutions can take advantage of women and people of color.
These are complex issues that we're still working out today, says Rebecca Skloot, author of the 2010 bestselling book The Immortal Life of Henrietta Lacks, which traces the controversy behind the HeLa cell line and the personal stories of Henrietta's family today. It's also the basis for the HBO movie of the same name, which stars Oprah Winfrey, Rose Byrne, and Renée Elise Goldsberry, and premieres this Saturday, April 22. We talked to Skloot about developing the movie and why Lacks' story still resonates so strongly.
What was it like to translate the book into a movie?
"One of the things that was very challenging for everyone who worked on the film was the question of, 'How do you convey science on film?'… And, as people in the science world, we always want to see science on film because it’s so important for [audiences] to see, learn about, and feel comfortable with science.
"Yet it does present these very specific challenges, like, how do you explain cell division in a film and make it dramatic and interesting? I wrestled with the same thing in the book. But, obviously, you can do much more in a book. I had the luxury of 400 pages to explain all these things and they had two hours… [In the] opening credit sequence they essentially boiled down 40 years worth of science and advances and complex ethical questions."
"[There are also] things that the film was able to do that you can't do in a book. No matter how you describe a picture, unless you see the look on someone’s face, [you can't accurately convey it]. It evokes a very different emotion to actually see it. I was really struck by that — there are these glimpses of Deborah or Henrietta where, because the actors are so incredible, you see 10 pages worth of material in a look on their face."
One of the central issues that both the book and film tackle is informed consent, which requires that patients give permission for researchers to use their tissue samples. What's changed in our informed consent policies since the book was published?
"The short answer is nothing. The longer answer is that, in 2011, there was a proposal to change the law that governs research on tissues in a way that would have required getting informed consent for any tissue used in research… After a five-year process of people working really hard to figure out how to insert this into the law, it didn’t happen. But that’s not over yet. I think it's going to be a discussion we keep having.
"The way the law is currently, to do what happened to the Lacks kids in the 70s — scientists going to them and taking tissues just for research — that would require consent today. But what happened to Henrietta? Not really. If tissues are taken during the course of a medical procedure, not taken specifically for research, and your identity is removed from those tissues, they can be stored and used in research and it does not require consent. So a large amount of tissue research done today uses tissues that came from people who don’t know that their tissues are being used.
"This is really important research, we all want it to happen, and this is what leads to some of our most important medical advances. But there has been this debate for decades about whether you should do this without asking people… Since the book came out and in the years that I've been traveling and talking about it, I've heard from thousands and thousands of people who say, 'We get it — tissue research is really important, we want to be able to help science, but we want them to ask. We just don’t want to find out after the fact.' Some people don't care, but a lot of people do care."
At a time when women's bodies are becoming increasingly politicized, what do you think we can learn from this story?
"The guidelines that govern science are usually quite a bit behind science itself. Science moves forward and evolves, and new questions come up ... Scientists do their best to work within that, but sometimes outdated legislation is really harmful to science. That’s part of what we’re dealing with — a lot of regulations are outdated.
"There was a moment in 2013 where scientists sequenced the genome of the HeLa cells and posted it online for anyone to download. The people who wrote the laws governing tissue research [in the 1970s] probably could not have imagined that would be possible.
"HeLa cells are Henrietta's cancer cells, so the genome of the HeLa cells isn’t the same as her genome. But it has a lot of her in it, and it has a lot of information about her kids and her grandkids. The idea that someone could just sequence that and post it online for anyone to download without getting any sort of permission and without having done anything illegal when they posted it is not something that could have been conceived of by these lawmakers. But it's a big privacy concern as we enter into this period of time.
"One of the big issues with the current law is that it hinges on anonymity: If your name is removed from your cells, we don't have to get permission to use them in research. But in the last several years, scientists have shown that you can take an anonymous sample with DNA in it and figure out who it came from. Not just anyone can do it, but if you know what you're doing you can do it. The fact that the law hinges on this anonymity but yet we know today that anonymity isn't really technically possible with cells, [makes you wonder] what’s going to be possible 10 or 15 years from now.
"And it's all intertwined with these policy questions… It [comes down to] this complicated question of how do you write any sort of law that protects privacy and people's right to know what’s going on with their bodies, but also doesn't inhibit science?"