Henrietta Lacks.
Ever heard of her?
Me neither.
I heard this story on NPR yesterday, an interview with the author of The Immortal Life of Henrietta Lacks.
This story brought me to the edge of tears.
Henrietta was an African American woman who lived in Baltimore. The mother of five, she and her husband moved from rural Virginia to capitalize on the booming steel marketing during WWII. In 1951 at the age of 30, she began bleeding abnormally and was admitted to Johns Hopkins Hospital, the only major hospital that accepted African American patients.
She had a very aggressive form of cervical cancer. At the time, the standard treatment was to attach radium to tumors. When she was undergoing surgery, doctors took a sample of her healthy cervical cells and a sample of the cancerous cells.
Also in the hospital, there was a researcher who had been unsuccessfully trying to grow cell lines for years. It was standard to take tissue samples of patients, without the patient's knowledge or permission, for research purposes.
Well, for some reason, her cells duplicated like crazy in the lab and the researcher finally had the scientific success he'd been seeking.
Henrietta died from cervical cancer at age 30 and there is no proof that she ever knew about this. One doctor said he told her she'd be immortal now and that she was happy to help. But her family didn't know until the 1970s.
These cells became known as the HeLa line, the very first line of cells replicated in the laboratory. They are still used now and there are trillions more cells all over the world than she ever had in her body. The cells were pivotal in modern medical breakthroughs: the polio cure, chemotherapy, In Vitro Fertilization and AIDS therapies. Those are just the highlights.
Author Rebecca Skloots spent ten years researching this book. Henrietta's family has never benefited financially, in fact one of her five children was homeless. Once learning of this, members of the family became bitter, pointing out that their mother directly led to medical treatments that they couldn't even access because of our health care system.
This story is heartbreaking and fascinating to me, on so many levels. I ordered the book last night and am looking forward to reading it. I don't think that it's about race because the researcher didn't even know she was AA and tissue samples were taken from everyone. However, since the hospital was the only one that accepted AA patients, it can't be totally removed from race either.
But what rights to people have to control the fate of their body? And why isn't this woman in our history books? And do her descendants have any rights to benefit from their mother's cells, to share from the billions in profit from the pharmaceutical industry?
I don't know. I just don't know. But this story gives me the creeps.
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2 comments:
Your first question is the easy one. People *should* have the right to control the fate of their body, unless they are somehow infringing on rights of others in their pursuits. Or, I suppose, if they voluntarily entered into an agreement (contract) to do otherwise.
Second question harder and, of course, pursued in other contexts beside this particular case. Would think that there could be a legitimate claim against original researcher IF there was an agreement (formal (altho unlikely in this case) or implied (based on nature of data collection) that essentially resulted in exchange that specified 'my tissue for a potential payoff from your research.'
Not knowning the details of this situation (and my guess is that it hasn't been well flushed out by this modern day project), would think it's reasonable to propose that the implied exchange that did take place was 'tissue for treatment.'
What I am pretty sure of is that even if their was a claim against initial researcher, such a claim can't be carried forward to what happened afterward in medicine development, unless there was a contractual arrangement that specified so.
I think this would hold true whether this person's cells were being used for study/experiments (info only) or whether the cells were being used as raw material for medicine development.
On a tangential subject, I've been doing a fair amount of reading regarding the legitimacy of intellectual property laws (patents, trademarks, copyrights). And I must say I've done a 180 here. I now believe that intellectual property is not 'property' at all. Essentially the argument is that ideas cannot be owned--partly because the 'raw material' that goes into them (other people's ideas, thoughts, etc) were not the sole property of the IP claimant.
There's a strong case to be made (both reason and empirical evidence) that the monopoly privileges that IP laws grant suppress competition and reduce standard of living over time.
A very interesting claim that is sure to spark some lively debate!
Maybe she's not in the history books, but I teach High School Biology and she's in the Science books!
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