Henrietta Lacks was born on August 1, 1920, one hundred years ago. She died on October 4, 1951 of cervical cancer, only thirty one years of age. But she has lived on through her genes, her “immortal” HeLa cell line which has enabled great medical advances in research of cancer, HIV/AIDS, poisoning, gene mapping, and other fields.
And all of it done without her permission. Doctors took her cells from her ill and deceased body without consent. Her cells were replicated without acknowledgement of their source. And no compensation was ever given to Ms. Lacks nor her family despite the billions of dollars the medical industry has profited over the past seventy years.
A farcical “deal” in 2013 only gave Ms. Lacks’s family the right to decide how her cells will be used and acknowledgement of their source. But there was no offer of compensation.
I would not call this “making good”.
On Tuesday, the National Institute of Health announced it was, at long last, making good with Lacks’ family. Under a new agreement, Lack’s genome data will be accessible only to those who apply for and are granted permission. And two representatives of the Lacks family will serve on the NIH group responsible for reviewing biomedical researchers’ applications for controlled access to HeLa cells. Additionally, any researcher who uses that data will be asked to include an acknowledgement to the Lacks family in their publications.
The new understanding between the NIH and the Lacks family does not include any financial compensation for the family. The Lacks family hasn’t, and won’t, see a dime of the profits that came from the findings generated by HeLa cells.
The family has not given up the fight for compensation, and nor should they. This is yet another example of white doctors mistreating Black women patients, treating them as property and without the right to informed consent.
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The eldest son of Henrietta Lacks wants compensation from the Johns Hopkins University and possibly other institutions for the unauthorized use of her cells in research that led to decades of medical advances.
Lawrence Lacks said that he is the executor of his mother’s estate and that an agreement the National Institutes of Health made with other family members over the years regarding use of the cells were not valid. That agreement did not include compensation.
The cells collected from the 31-year-old Turners Station woman during a diagnostic procedure before she died of an aggressive form of cervical cancer in 1951 were the first to live outside the body in a glass tube. They were dubbed the HeLa cells and have become the most widely used human cells that exist today in scientific research.
Vaccines, cancer treatments and in vitro fertilization are among the many medical techniques derived from her cells.
“My mother would be so proud that her cells saved lives,” Lawrence Lacks said in a statement. “She’d be horrified that Johns Hopkins profited while her family to this day has no rights.”
Is what was done to Henrietta Lacks any different than the Tuskegee Experiments? The use of Black women enslaved by butchers to study gynacology? It’s another form of colonialism and it still continues today.
A pittance has been offered to the Lacks’s family foundation. It is an insult and symbolizes everything wrong with how the US and many other countries treat Black people.
When Henrietta Lacks went to Johns Hopkins Hospital with cervical cancer in 1951, a researcher took cells from her tumor and discovered that, unlike other human cells, they survived and continued to replicate in the lab. HeLa cells, as they’re known, have since been sold all over the world, allowing countless researchers and companies to benefit. They’ve contributed to two Nobel prizes, the development of polio and HPV vaccines, cancer treatments, and AIDS research. A Black woman’s cells, taken without her consent or knowledge, transformed science.
Last week, two labs announced they would make the first donations in recognition of how they’ve profited from Lacks’ cells. But some scientists are underwhelmed by the field’s overall response.
“The amount of money being discussed versus profits made is ludicrous,” says Arthur Caplan, head of medical ethics at New York University’s School of Medicine. “If this is reparations for past racist and class abuse it isn’t even a drop in the bucket. Pure symbolism and nothing more.”
In an era where the Black Lives Matter movement is front and centre, this is an even bigger insult than the “offer” of seven years ago.
In the conversations about decolonising education, STEM subjects are often overlooked, perhaps because people consider them to be based on facts rather than perspectives. But when lecturers still often celebrate Watson and Crick for discovering the structure of DNA – with no mention of Watson’s racist views and support of eugenics – it is clear that decolonisation of the sciences is important.
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One of the best-known examples of Black people being exploited in science is Henrietta Lacks. [. . .] In fact, the HeLa cell line is still used for scientific research today, with over 60,000 scientific articles published based on research using HeLa cells. The story of Henrietta Lacks raises important questions of informed consent and ethics within science: HeLa cells have been influential in creating the polio vaccine and developing anti-cancer drugs such as tamoxifen, but their commercial use meant her cells were sold across the world by pharmaceutical companies for thousands of pounds whilst the Lacks family could not afford healthcare.