Henrietta Lacks family sues biotechnology company for benefiting from “stolen” cellsExBulletin

Alisa Chan, Host:

In 1951, a black woman named Henrietta Lacks set foot in Johns Hopkins Hospital complaining of pain. The doctor diagnosed her with cervical cancer. She died just a few months later. But what the five mothers didn’t know was that her cells lived longer than she did and were used to develop new drugs and vaccines. So who will benefit from it? As WBUR’s Yasmin Amer explains, the question is at the heart of the new proceedings.

Yasmine Amar, Byline: As Ron Lux says, Henrietta Lacks cells were abnormal and powerful.

Ron Lux: We consider grandmothers to be superheroes. The family is very proud that their grandmother’s cells have helped many.

AMER: Her cell was the first known immortal cell. She prospered while other cells died in the lab. They proliferated. They empowered doctors to carry out new and innovative research. Names and assets called Henrietta Lacks HeLa cells were built on them. Attorney Ben Crump has filed a proceeding on behalf of Lux’s real estate.

Ben Crump: Why is her family not receiving one red penny when everyone else can benefit from her cells?

AMER: The subject of the proceeding is Thermo Fisher Scientific, which sells a commercial line of HeLa tissue. A biotechnology company based in the suburbs of Boston has accused Henrietta Lacks of unfair gains as it continued to profit from HeLa cells even after learning that it did not allow it to be ingested or used. .. Currently, the family wants financial compensation from Thermo Fisher and other companies to get the family’s permission. Again, her grandson, Ron Lux.

Lack: So I have to tell this story. I have to regain control of Henrietta’s heritage. This is incorrect.

AMER: A spokesman for Thermo Fisher Scientific said there was no official response to NPR yet. After Rebecca Skloot’s 2010 book and the HBO movie starring Oprah, it became more widely known what happened to Lux. Glencohen teaches law and bioethics at Harvard University and says that what happened to Lux was not uncommon.

Glenn Cohen: Indeed, historically, no one said that what was done to Henrietta Lacks was a moral mistake, as was done to many black women who were seeking hospital treatment at the time. Agree.

AMER: Cohen says what happened to Lux was unethical, but the proceedings may be difficult for the family to win.

Cohen: There is a legal issue when the tissue is harvested. Requesting informed consent was not the ethical rule of the day.

AMER: Another issue is precedent. Those who have previously sued genetic material have not been very successful. But Ben Crump, a lawyer who represented George Floyd’s family, said times have changed, and Lux’s story is one of racial injustices.

Crump: Respect the fact that Henrietta Lacks’ life was important, Black Lives Matter. This is what we mean by trying to do racial calculations in America.

AMER: Although the medical consent law has changed since Lux’s death, businesses are still using our genetic material all the time.

Cohen: If you’ve had surgery when you went to a blood test, you’ve probably already agreed many times to the secondary use of a bunch of your body’s materials. Most of us have. A piece of paper we signed shows that this is the case.

AMER: According to Cohen, documents can usually be used for research or commercial purposes as long as the genetic material cannot be identified. This is due to a federal regulation called the Common Rule that governs medical consent in the United States. Inspired by what happened to Henrietta Lacks, the Obama administration sought to make it clearer in 2015 to obtain a permit. But those efforts have failed.

Cohen: Most of us are informed about the right to oppose, but few actually oppose it. This is the effect of this case. But in a sense, it’s not the effect the family wanted.

AMER: Meanwhile, other biotechnology companies are closely watching the proceedings. This is the first proceeding by the Lux family, but there are possible more proceedings. For NPR News, I’m Yasmin Amer from Boston.

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