The Immortal Life of Henrietta Lacks.

[azurnoir]

In 1951, a 31-year-old woman by the name of Henrietta Lacks took her last breath. Unfortunately, she succumbed to the cervical cancer that took residency in her body, but the legacy that she left behind shaped DNA and cancer research as we know it. She was treated for her illness at Johns Hopkins. During one of her radiation sessions, two samples were taken from her cervix without her permission. One sample was swapped from a healthy area of her cervix, while the other was taken from a cancerous area.The cells eventually became known as HeLa immortal cell line and are generally used in biomedical research. The interesting tale is best recounted in 2010 best-seller, The Immortal Life of Henrietta Lacks.

The legal battle was a rather legnthy one, but the family reached a settlement with the National Institutes of Health. According to Washington Post, under the new agreement, two family members will retain seats on the six-member committee that regulates scietists and doctors who want to conduct research on the cells. In addition to being including in the decision making,they will receive their due credit in any scientific journals that come as a result of the research being conducted on the cells. According to the Huffington Post, this decision was reached after the family raised concerns about researchers who wanted to go public with Henrietta’s DNA makeup.

http://madamenoire.com/290235/family-of-henrietta-lacks-reach-settlement-in-hela-cancer-research-case/

[msrizzo]

1. Researchers did in fact go public with the genome in 2013.

And then subsequently pulled the genome from public databases after the outcry. This is indeed the resolution of lengthy negotiations. I'm glad the Lacks family in now included in the decision making. It's the least that can be done at this point.

http://www.nature.com/news/hela-publication-brews-bioethical-storm-1.12689

[catrose]

2. I'm happy they at least have some voice

But I want the family to have some of the profits that others have made from their dead mother's cells.

[stevenleser]

9. They deserve it but I don't see it happening. Even a small percentage would make them richer than

Warren Buffet

[qwlauren35]

3. Interesting outcome.

Far more appropriate than just money.

I read the book, and was kind of mixed on my feelings. If they had just told the family, and convinced the family of the incredible possibilities of those cells, the story would not have been written.

And if the family had said no, I hope Johns Hopkins would have convinced them with a huge sum of cash.

The importance of those cells is amazing. They were critical in major developments of medical science. And NO ONE was hurt in their harvesting. This is not the Tuskegee Experiment. She was not allowed to die so that they could harvest her cells. It was not like that at all.

So, mixed feelings. When superstition trumps science, I will always be saddened. And if they said no, it would have been a tragedy.

[Downwinder]

4. Tissue donations for research are important.

Our daughter died from triple negative breast cancer. She specified a donation.

[Number23]

5. What an interesting post and a great contribution to this group.

Do you think you could post it in the Black History that Doesn't make it into the History books thread at the top of this forum too?

Thanks!

[azurnoir]

7. Thanks

[ellenrr]

6. The book about Henrietta Lacks by Rebecca Skloot is fascinating and

so is the BBC documentary.

[onpatrol98]

8. Excellent Post!

During one of her radiation sessions, two samples were taken from her cervix without her permission.
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You're so vulnerable when you go for any kind of hospital visit. I mean...think about that for a moment. To me...a 31 year old is SO DAMN YOUNG. And, this tissue really was taken while she was dying, if you think about it...without her permission. They didn't ask permission. I mean why should they. She was just a young black woman. She wasn't Miss Millie. And, even now...you have the National Institute of Health reaching an agreement. Think about that for a moment.

Your daughter, your sister, your wife, your mother, you...samples taken with her permission or even yours as a loved one...but, don't worry. We'll reach an agreement with you...about your daughter, your sister, your wife, your mother...you.

If it's that important, it's important enough to do it decently.

I'm not all that conflicted.