Let’s Remember: Henrietta Lacks, 1920-1951


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”.

NIH finally makes good with Henrietta Lacks’ family — and it’s about time, ethicist says

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.

Continued below the fold.

Henrietta Lacks’ family wants compensation for her cells

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.

All of medicine should be paying reparations to Henrietta Lacks

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.

We can’t forget that scientific research is steeped in colonialism

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.

[. . .]

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.

Comments

  1. billseymour says

    If I were dead, scientists would be free to use my cells for anything they want to do with them; and there wouldn’t be any me to compensate.

    Is what was done to Henrietta Lacks any different than the Tuskegee Experiments?

    Well, yes, I think that giving syphilis to unsuspecting living subjects is a difference in kind, not just a difference in degree.

    Sure, there was racism in both cases; but, sadly, that remains prevalent pretty much throughout the world and is hardly a reason to group Lacks and the Tuskegee victims.

    • billseymour says

      OK, I misunderstood what the Tuskegee experiments were all about. I should have double checked before posting what I did.

      But I still think the Tuskegee business differed in kind. The victims were actively harmed by allowing the disease to proceed without treatment, and were lied to about whether they were receiving treatment. And I was appalled to learn that the Tuskegee horror lasted until 1972.

      I don’t see how Laks was harmed, and from what I read, she was given the best treatment that was known at the time. IIUC, I’m still alive and I shed lots of cells daily. I don’t feel the loss.

  2. brucegee1962 says

    Personally, I would be thrilled if parts of my body I didn’t need any more could advance the cause of medicine. Also, I don’t believe that any patients of any color were asked for consent for their tissues to be used for research at the time. But there were certainly privacy issues for her family with her gene sequence being published.
    I haven’t seen anything that says that taking her cells would have shortened her life, or that she missed out on beneficial treatment she should have had due to her condition, so I agree it’s different in kind from the Tuskegee monster doctors.

  3. says

    billseymore,
    If my sister outlives me she would have an interest in what is done with my body. If I’m still alive I have an interest in any special properties my cells or genes may exhibit. If I don’t profit from them no one should make more than what is necessary to recover costs in production of whatever is produced. Like Dr Salk didn’t charge for the polio vaccine.

  4. brucegee1962 says

    robertbaden,

    If I don’t profit from them no one should make more than what is necessary to recover costs in production of whatever is produced.

    “Should”? Why “should” they? I don’t know much about Salk, but presumably he must not have been trying to pay off student loans, send kids to college, etc.
    If there isn’t a profit motive or some other means to incentivize research, it won’t get done. People will go into other fields, and the research won’t happen.

    If I’m still alive I have an interest in any special properties my cells or genes may exhibit.

    Why? You haven’t done anything to deserve your DNA — you happen to have won a genetic lottery. You’re saying if you happen to be born with a genetic mutation that zaps cancer, aren’t the scientists who spend their entire lives unlocking the secrets of your genes entitled to far more than you who just happened to be lucky with the roll of the genetic dice?

    • says

      You’re overlooking a key point: those aren’t researchers doing it for the public good. These are corporations profiting on something they did nothing to create, build or discover. They saw something they could profit from and took it without permission because they could, and without consequences. Even if there was no racist or colonialist intent, it still looks like it. If it looks inappropriate, it probably is.

      James Harrison and other people have voluntarily donated their blood and other body parts for medical purposes, but they gave informed consent. Henrietta Lacks was never asked for nor gave consent. Maybe she would have, but maybe is not “yes”. And if she refused, that was still her right. They had no right to take her cells without permission, even if there was no profit motive.

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