The Immortal Life of Henrietta Lacks by Rebecca Skloot

the immortal life of henrietta lacksContent warning for cancer, racism, classism, medical procedures, death.

If you’re anything like me, you’ve probably never heard about Henrietta Lacks, although you might have heard about HeLa cells. The first line of immortal cells, that have been used to research what causes cancer, and how can we suppress it, developing drugs for herpes, influenza, leukemia and Parkinson’s disease. With their help scientists have been able to study sexually transmitted diseases, lactose digestion, human longevity, etc., and today these cells can be found in almost every laboratory in the world.

The Immortal Life of Henrietta Lacks by Rebecca Skloot covers all of the important research that became possible thanks to the HeLa cells, and just as importantly, it covers the background story of Henrietta Lacks, a poor, black tobacco-farmer who died of cervical cancer in 1951 – never even knowing that the cells had been taken from her, or what they were being used for. It is also the story of a racist, class-divided society where the children of the woman, whose cells made millions and made so much important research possible, cannot themselves afford health insurance or health care. Furthermore it raises vital ethical questions around tissue donation, research and who profits.

Skloot shows the appalling reality behind how many African-Americans were treated in research:

“What do you know about African-Americans and science?”
I told him about the Tuskegee syphilis study like I was giving an oral report in history class: It started in the thirties, when U.S. Department of Public Health researches at the Tuskegee Institute decided to study how syphilis killed, from infection to death. They recruited hundreds of African-American men with syphilis, then watched them die slow, painful, and preventable deaths, even after they realized penicillin could cure them. The research subjects didn’t ask questions. They were poor and uneducated, and the researchers offered incentives: free physical exams, hot meals, and rides into town on clinic days, plus fifty-dollar burial stipends for their families when the men died. The researchers chose black subjects because they, like many whites at the time, believed black people were a “notoriously syphilis-soaked race.”
The public didn’t learn about the Tuskegee study until the seventies after hundreds of men enrolled in it had already died. The news spread like pox through black communities: doctors were doing research on black people, lying to them, and watching them die. Rumors started circulating that the doctors had actually injected the men with syphilis in order to study them.
“What else?” Pattillo grumbled.
I told him I’d heard about so-called Mississippi Appendectomies, unnecessary hysterectomies performed on poor black women to stop them from reproducing, and to give young doctors a chance to practice the procedur. I’d also read about the lack of funding for research into sickle-cell anemia, a disease that affected blacks almost exclusively.

Henrietta Lacks

The most well-known picture of Henrietta Lacks

She also illuminates how rarely people would questions doctors in the 1950’s, especially not if you were African-American:

In early June [1951], Henrietta told her doctors several times that she thought the cancer was spreading, that she could feel it moving through her, but they found nothing wrong with her. “The patient states that she feels fairly well,” one doctor wrote in her chart, “however she continues to complain of some vague lower abdominal discomfort…No evidence of recurrence. Return in one month.”
There’s no indication that Henrietta questioned him; like most patients in the 1950’s, she deferred to anything her doctors said. This was a time when “benevolent deception” was a common practice – doctors often withheld information from their patients, sometimes not giving them any diagnosis at all. They believed it was best not to confuse or upset patients with frightening terms they might not understand, like cancer. Doctors knew best, and most patients didn’t question that.
Especially black patients in public wards. This was 1951 in Baltimore, segregation was law, and it was understood that black people didn’t question white people’s professional judgement. Many black patients were just glad to be getting treatment, since discrimination in hospitals was widespread.
There’s no way of knowing whether or how Henrietta’s treatment would have differed ifs he’d been white. According to Howard Jones, Henrietta got the same care any white patients would have; the biopsy, the radium treatment, and radiation were all standard for the day. But several studies have shown that black patients were treated and hospitalized at later stages of their illnesses than white patients. And once hospitalized, they got fewer pain medications, and had higher mortality rates.

The cells were originally taken from Henrietta without her knowledge or consent, after she died her husband was pressured into giving his permission for an autopsy – and for more cells to be taken. But taking Henrietta’s cells without her consent, wasn’t the only unethical thing researchers did. HeLa cells were also injected into patients with cancer, as well as healthy people to see what would happen – again without their consent.

While HeLa cells were incredibly useful in research, they also turned out to be much more potent than any researchers could have predicted:

Scientists knew they had to keep their cultures free from bacterial and viral contamination, and they knew it was possible for cells to contaminate one another if they got mixed up in culture. But when it came to HeLa they had no idea what they were up against. It turned out Henrietta’s cells could flat through the air on dust particles. They could travel from one culture to the next on unwashed hands or used pipettes; they could ride from lab to lab on researchers’ coats and shoes, or through ventilation systems. And they were strong: if just one HeLa cell landed in a culture dish, it took over, consuming all the media and filling all the space.
Gartler’s findings did not go over well. In the fifteen years since George Gey had first grown HeLa, the number of published articles involving cell culture had more than tripled each year. Scientists had spent millions of dollars conducting research on those cells to study  the behavior of each tissue type, comparing one to another, testing the unique responses of different cell types to specific drugs, chemicals, or environments. If all those cells were in fact HeLa, it would mean that millions of dollars had been wasted, and researchers who’d found that various cells behaved differently in culture could have some explaining to do.

I think the part that really broke my heart, was getting to know Henrietta’s children, who for the most part didn’t get the chance to really know their mum. Children who for the longest while never even knew that scientists were doing research using their mother’s cells – and children who lived in a society where their mother’s cells might have made corporations millions of dollars, but they couldn’t afford health insurance and health care:

As we walked toward the front door of his building, Zakariyya turned to me. “Them doctors say her cells is so important and did all this and that to help people. But it didn’t do no good for her, and it don’t do no good for us. If me and my sister need something, we can’t even go see a doctor cause we can’t afford it. Only people that can get any good from my mother cells – they get rich off our mother and we got nothing.” He shook his head. “All those damn people didn’t deserve her help as far as I’m concerned.”

“I know my life could be better and I wish it was,” she told me. “When people hear about my mother cells they always say, ‘Oh y’all could be rich! Y’all gotta sue John Hopkin, y’all gotta do this and that.’ But I don’t want that.” She laughed. “Truth be told, I can’t get mad at science, because it helped people live, and I’d be a mess without it. I’m a walking drugstore! I can’t say nuthin bad about science, but I won’t lie, I would like some health insurance so I don’t got to pay all that money every month for drugs my mother cells probably helped make.”

Sonny had a quintuple bypass in 2003, when he was fifty-six years old – the last thing he remembered before falling unconscious under anesthesia was a doctor standing over him saying his mother’s cells were one of the most important things that had ever happened to medicine. Sonny woke up more than $125,000 in debt because he didn’t have health insurance to cover the surgery.

The bigger questions we are left with, are questions around ethicacy. Do we need to give our consent for our tissues to be used in research? Do we get to decide what kind of research? What about the profits, who gets to share in those? While I think most people would be happy to donate our cells to research, if we can help other people that way, it is a different question if you or your family can’t afford health care. Or if corporations are making such large profits from that research, that the results of the research only benefits the few and privileged.

When I tell people the story of Henrietta Lacks and her cells, their first question is usually Wasn’t it illegal for doctors to take Henrietta’s cells without her knowledge? Don’t doctors have to tell you when they use your cells in research? The answer is no – not in 1951, and not in 2009, when this book went to press.

There are, essentially, two issues to deal with: consent and money. For most people, knowing if and how their tissues are being used in research is a far bigger issue than profiting from them. Yet when this book went to press, storing blood and tissues for research did not legally require informed consent, because the law governing such things doesn’t generally apply to tissue research.

“You can’t ignore this issue of who gets the money and what the money is used for,” says Clayton. “I’m not sure what to do about it, but I’m pretty sure it’s weird to say everybody gets money except the people providing the raw material.”

I highly recommend The Immortal Life of Henrietta Lacks and frankly think it should be required reading for everyone.

Have you read The Immortal Life of Henrietta Lacks, and if so what did you think of it? Do you have any thoughts or comments on the ethical questions around tissue research?

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