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Henrietta Lacks: Stolen cells

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I never heard of Henrietta Lacks until a few days ago. But I have heard of the Tuskeegee Experiment in which 399 Black men were used as clinical samples for studying the late stages of syphilis. The men who were poor sharecroppers from Alabama, where never told they had syphilis and no doubt died horrible painful deaths for an illness which was treatable but not for them.

Henrietta Lack’s stolen cells is another experiment without consent. In February 1951 Henrietta was diagnosed with cervical cancer at John Hopkins hospital. Nine months later she was dead. During her treatment – what treatment she received is not clear, tissue samples were removed without her knowledge and consent and handed over to Dr George Gey.

Ms. Lacks’ cells were different. Her tumor grew so aggressively that at her autopsy, just eight months after the cells were removed, it was found that her cancer had infiltrated her entire body.
These extraordinary growth properties, while deadly for Henrietta, were probably what brought success to Gey. He was able to keep the cells growing in a dish long-term, and he soon found himself sending samples to other scientists who wanted to study human cells, who then passed them on to their colleagues, and so on and so on.

The cells became known as HeLa cell line and have been used extensively in research from developing the polio vaccine to research for cancer . HeLe cells were able to travel by air and hands so other cell cultures were also found with HeLe. But it gets worse – 25 years after her death members of her family were contacted and told about the stolen cells and asked to provide blood samples for further research. What was the truth about her “treatment”? Was she herself injected with other diseases or poisons? Even if it was just the cells, without her consent and when she was still alive, it is obscene.

The experiments sound like something out of a sci-fi movie except these were real. Henrietta’s life and death and that of her family were all violated by science. The US has a history of using humans as live experiments and that many more poor, working class and Black people as well as prisoners, orphans and soldiers were subjected to medical experiments of one kind or other continues. As late as 2001 children in foster care in New York were used for AIDS drugs trials – some as young as 3 months old.

HT: Malaika H Kambon for posting this on FB

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5 Comments

  1. I’ve seen nothing to suggest that Henrietta Lacks cancer was not treated with the best available medicine at the time. The biopsy of the abnormal mass on her cervix was done to diagnose cancer. A doctor other than her gynecologist tested to see if the cells from the tumor could be grown in culture.

    While no express permission was given by Henrietta Lacks for this permission for this sort of use according to the New York Times article on the book about Lacks is standard in the release today’s patients sign in order to get treatment. When the family was contacted years later, it does seem to me that the reasons for the interest were not adequately explained. But the context why the family was tested is important. The He La line of cells grown in culture was the first, but then many other lines were grown. However most of these other lines were inadvertently contaminated with cells from the He La line and were essentially He La line cells even when researchers thought them something else, like breast cancer or prostate cancer. Adam Curtis did a documentary about the story from this angle.

    I have read many takes on this story quite similar to yours. I do think that the issue of tissue rights is something we all might consider. And the shameful history of medical experimentation worth knowing about. But what bothers me about your take and others is the family of Henrietta Lacks being dealt a cruel hand; loosing a loved one to a horrible disease and then the confusion around the genetic work done later, has worked hard to make the contributions of Henrietta Lacks to science and medicine recognized and celebrated. That’s the take the family wants the public to know. Making the story another Tuskeegee Experiment is not what the family has tried to present.
    .-= John Powers´s last blog ..Fitting in Our World Society =-.

  2. Comment by post author

    Sokari

    My reference to the Tuskeegee experiment and others listed on the post is that these were undertaken without the knowledge and permission of those involved. If this had happened to a member of my family I would be outraged and would feel that both the individual involved and our family had been violated not to speak of the legalities of such acts. I am sure the reasons for the family being contacted was important to medical science and I have no issue with that. But the way in which both Henrietta and her family were treated was in my opinion unethical. We have a right and to know what is happening to our bodies and bits taken from them and this needs to be explained beyond signing release forms which In Henrietta’s case we are not sure happened.

  3. TBL

    That’s awful, completely unethical and a violation of Henrietta Lack’s rights and needs.

    I had heard of the Tuskeegee experiment, but have never heard of this case before. Thanks for writing about it.

  4. “We have a right and to know what is happening to our bodies and bits taken from them and this needs to be explained beyond signing release forms”

    I absolutely agree with you about this. As it stands now I’m not sure how much patients seeking treatment can really opt out of research done with our cells. That’s an issue we all should pay attention to.

    The family of Henrietta Lacks did finally get the incredible story of the cells taken from Henrietta Lacks’ cancer. The way all that went down was really quite traumatic for them, because as you point out they were not fully informed along the way. Going through what they went through they thought about what would make a bad situation right. They came up with making sure that the story of Henrietta Lacks was known so that people could appreciate her unique contribution. The cooperation with Rebecca Skloot on her book “The Immortal Life of Henrietta Lacks” is just one way they’ve done this.

    Outrage indeed has its place and is useful. What I’m concerned about is that in being outraged that the family’s intention that Henrietta Lacks be recognized for contributing so much to our understanding of cancer and many other diseases gets lost. Along with our outrage Henrietta Lacks deserves props.
    .-= John Powers´s last blog ..Fitting in Our World Society =-.