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In 1951, a Black woman named Henrietta Lacks walked into Johns Hopkins Hospital in agonizing pain. Doctors diagnosed her with cervical cancer. She died just months later. But what this mother of five never knew was that her cells would outlive her and be used to develop new drugs and vaccines. So who gets to benefit from that? As Yasmin Amer of WBUR explains, that question is at the center of a new lawsuit.
YASMIN AMER, BYLINE: Henrietta Lacks' cells were unusual and powerful, as Ron Lacks says.
RON LACKS: We look at my grandmother as a superhero. The family just is very proud that our grandmother's cells was able to help so many.
AMER: Her cells were the first known immortal cells. Whereas other cells died in the lab, hers thrived. They multiplied. They gave doctors the ability to do new, innovative research. Names and fortunes were built on them, nicknamed HeLa cells for Henrietta Lacks. Attorney Ben Crump filed the lawsuit on behalf of the Lacks estate.
BEN CRUMP: Why is it that everybody else can benefit because of her cells, yet her family have not received one red penny?
AMER: The target of the suit is Thermo Fisher Scientific, which sells a commercial line of HeLa tissue. It accuses the biotech company based outside of Boston of unjust enrichment because the company continued to profit from HeLa cells, even after learning that Henrietta Lacks never gave her permission for them to be taken or to be used in that way. Now the family wants financial compensation from Thermo Fisher and for other companies to get the family's permission. Again, her grandson, Ron Lacks.
LACKS: So I have to tell this story. I have to take back control of Henrietta's legacy. This is not right.
AMER: A spokesman for Thermo Fisher Scientific told NPR the company has no official response yet. What happened to Lacks became more widely known after Rebecca Skloot's 2010 book and an HBO movie starring Oprah. Glenn Cohen teaches law and bioethics at Harvard and says what happened to Lacks wasn't unusual.
GLENN COHEN: Certainly historically, everybody agrees that what was done to Henrietta Lacks, as it was done to many Black women who sought hospital care at that time, was a moral wrong.
AMER: Cohen says although what happened to Lacks was unethical, the legal case might be difficult for the family to win.
COHEN: There's a legal matter at the time in which the tissue was taken. It was not the ethical rules of the day to require informed consent.
AMER: Another problem is precedent. People who have sued over their genetic material before haven't had much success. But attorney Ben Crump, who also represented the family of George Floyd, says times have changed, and the Lacks' story is one of racial injustice.
CRUMP: Respect the fact that Henrietta Lacks' life mattered, that Black Lives Matter. This is what we mean by trying to have a racial reckoning in America.
AMER: Laws regarding medical consent have changed since Lacks died, but companies still use our genetic material all the time.
COHEN: You've probably already many times given consent for the secondary use of a bunch of your body materials - when you've gone for a blood test, if you've ever had a surgery. Most of us have. There is a piece of paper somewhere that we've signed that indicates that this is the case.
AMER: Cohen says the paperwork typically says as long as your genetic material can't be identified back to you, it's OK to use it in research or commercial purposes. That's because of a federal regulation called Common Rule, which governs medical consent in the U.S. The Obama administration tried to make obtaining permission more explicit in 2015, inspired by what happened to Henrietta Lacks. But those efforts failed.
COHEN: Most of us have been informed about our right to object, but very few of us actually do. So that is an effect of this case. But I would say in some ways, it's not the effect that the family wanted.
AMER: Meanwhile, other biotech companies will be watching this lawsuit closely. It's the first suit by the Lacks family, but they may file more. For NPR News, I'm Yasmin Amer in Boston.
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