Last night I went to a talk given by Rebecca Skloot, the author of The Immortal Life of Henrietta Lacks, at the New York Society for Ethical Culture. I’d been hearing about the book on book blogs for quite some time, and TNC covered it awhile back – and all the reviews were glowing. It hasn’t, for whatever reason, gotten much coverage in the feminist and progressive blogosphere.
Here is the simplest version of Henrietta’s story. She was an African American tobacco farmer, who was diagnosed, at 30, with cervical cancer in February 1951, and dead by October that same year. She was treated at Johns Hopkins, in Baltimore, in an era in which hospital wards were still segregated. As doctors customarily did at the time, during her treatment – with radium therapy, in which small vials of radioactive material were sewn to her cervix – without her knowledge and consent, Henrietta’s cancerous tissue was harvested, and handed off to researchers. In the lab, the researcher discovered that Henrietta’s cells were extraordinarily good at replicating themselves, often aggressively climbing up the sides of test tubes. Because of that property – the ability to regenerate so robustly – the cells, dubbed “HeLa cells,” have been invaluable to medical research as a source of human cells on which to test vaccines (including the polio vaccine) and drugs. Henrietta’s cells are called the first “immortal cell line,” in that they lived on long after her death.
That’s the good part. The tragedy is this: Henrietta was married, and had five children, the eldest of which, Elsie, was deaf and mute. After Henrietta died, Elsie was placed into an institution, in the sort of horrific conditions one associates with Hollywood movies, where she later died. The other children were raised in poverty by their father, who had a third grade education. No one in the family received any compensation for Henrietta’s cells. The horrific irony is that in general, the Lacks family is too poor to afford health insurance, and so has largely been unable to benefit from medical advances Henrietta’s cells have occasioned, or if they have, only at great cost.
No one in the family was even aware that her cells were being used in this way until the 1970s, when they were told by chance. Scientists had in fact, as is standard ethical practice, tried to sever Henrietta’s identity from the cells at least publicly – medical students and scientists report being told by professors that the cells had originated with a white woman named Helen Lane. Nonetheless, scientists did, apparently, occasionally seek out Henrietta’s family members to ask for more tissue samples. Because of the family’s general circumstances and lack of education it was often quite difficult for them to understand why it was that these samples were wanted and they grew suspicious of scientists and journalists who visited them over the years, wanting something from them. Some family members, apparently, even had difficulty understanding the concept of a cell, and what kind of information might be contained within them. Skloot said that for example, Henrietta’s younger daughter, Deborah, only 2 when her mother died, had once asked researchers if, by studying Henrietta’s cells, they could tell what her mother’s favourite colour was, or whether or not she liked to dance.
The Lackses have never sued anyone, partly because of their suspicion of outsiders – apparently at least one ambulance chaser con artist has been around them – and partly because it’s not clear that anyone, at any point, did anything illegal at the time.
There’s so much to get into in this story. The intersection of race, class, and gender, into a perfect storm of powerlessness – because, although Skloot was pretty emphatic about giving the benefit of the doubt to scientists, it is unimaginable that this story could be the same had this been some white, wealthy Baltimore woman in whom these cells were discovered. The fact that legally, no one “owns” their own medical waste – and that in the end very few people, and apparently not even the Lackses, want this research to stop. The need for consent to be truly informed – in that fine print shouldn’t be the end-all and be-all of the obligation of scientists to make sure that people understand what is happening to them. (Skloot noted that every person she’s ever talked to who had their cells harvested without their consent, and later tried to take legal action, have always said, “If they had just asked me, I would have said yes.”)
But what struck me most was the fact that in a country with a more functional social safety net – universal health care, social assistance, half-decent public schools – the disparities between the Lackses’s situation, and the incredible wealth generated by the medical knowledge it occasioned, wouldn’t be so stark. They would have actively benefited from this research just like everyone else. Everyone at the talk last night seemed outraged that the Lacks family had little legal recourse – but the truth is, in complicated, qualified cases like this one, the courts make for extremely poor substitutes for social safety nets. Litigation is long, and expensive, and often fruitless, and in the end, even the injection of cash one gets at the end is small comfort for the years of waiting. In my opinion, anyway, there’s no substitute for the knowledge that at the end of the day, if something bad happens to you, you will be, at least materially speaking, okay. But maybe that’s just me being Canadian again.
Anyway, buy the book. I’m going to, this afternoon. Part of the proceeds go to a foundation established by Skloot for the Lackses, so don’t be shy about buying it in hardcover.
great post, especially the part about buying the hardcover to benefit the family
I don’t think I get it. Obviously I’m on the side of a social safety net and universal single-payer health insurance and any number of other progressive policies that would directly and indirectly benefit the Lacks family and those similarly situated. But I don’t understand the implication that they should have legal recourse or be compensated for the use of Henrietta Lacks’ cells.
I’ve had the book on hold at the library waiting for it to be published since I read a review of the book in Dec. As someone who has had many biopsies taken of “odd” bits of my various diseases I wonder what has happened to all my tissue. Anyway, yes, the Henrietta Lacks situation is all about intersectionality. I suspect now that the book is out, and more people read it, it will hit the fem. blogosphere.
Do you mean, “should not have legal recourse,” yvanehtnioj? Otherwise I’m confused by the comment.
No, I took this post (and specifically this section: “The Lackses have never sued anyone, partly because of their suspicion of outsiders – apparently at least one ambulance chaser con artist has been around them – and partly because it’s not clear that anyone, at any point, did anything illegal at the time.” plus this: “Everyone at the talk last night seemed outraged that the Lacks family had little legal recourse”) to say that they don’t have legal recourse for what happened … and that is a bad thing.
I don’t really understand that implication. What legal recourse should they have? Who should be sued? How would it be *less* exploitative to compensate people for human tissue?
Well, it’s not a bad thing, per me, that they don’t have legal recourse. What is the bad thing at the heart of all of this is how the question, “should people be compensated for their tissue?” can’t really be separated from the social context in which that tissue is harvested and what it is used for.
For example, the best argument there is (IMHO) that people shouldn’t be compensated for their tissue is a collective responsibility one – i.e. that, boiling down all the scientific intervention here, if you can help someone else, at frankly no cost to you, you ought to. They oughtn’t to have to pay you astonishing sums of money to receive that help. I mean, the advancement of medical science, particularly as it pertains to humans, isn’t anything but a collective value. It isn’t about self-interest.
The irony, of course, is that to make that argument in the social context of the contemporary United States, and even to have to throw in there problems like racial segregation (and the consequent treatment of African Americans as “lower priority” patients, which is well-documented), is ridiculously obtuse. Because the way this all played out for the Lacks family, this wasn’t really of benefit to them. They got stuck in this weird place where because of the disparities in access to medical services, and their inadequate education on certain matters, they were not able to benefit from that so-called collective value.
So it’s that kind of dissonance, between the high-mindedness of the justification for that sort of thing and the lived experience of people who don’t have the resources to access it, that makes me feel like the Lacks deserved better. What that “better” is, I admit I don’t know.
How interesting. Doctors and the medical profession are so contemptuous of lawyers and the law intruding into what they do. I often feel like they feel that because what they’re doing benefits the “greater good” they are above certain moral ambiguities. Like you say, the situation here is technically legal but should it be? It’s a fascinating question involving all sort of personal privacy rights v. public benefit etc etc.
I definitely agree that they deserved better from society and very likely from the medical establishment at the time (though given that she died 8 months after diagnosis, it’s possible that even the very best treatment in 1951 wouldn’t have changed the outcome). Likewise, the evolution of informed consent doctrine / standards since Henrietta Lacks’ tissue was harvested is unambiguously positive.
I guess I just imagined the first question from the audience at the talk being, “Can’t they sue anyone?” and thought, “Well, no. And who? And why?”
Skloot seemed to have a pretty strong understanding of the law and did point out the “who” questions. She mentioned a federal law which apparently states that a subject of scientific research can withdraw themselves from a study at will, but noted this wasn’t ideal for the Lackses since you’d have to (a) rely on a sort of weird argument that the Lacks descendants are the subject of the research since their samples were collected and are also of course contained in Henrietta’s original DNA; and (b) noted the parties in interest problem. I mean, obviously if you’re the plaintiff’s lawyer you have to go after Big Pharma, and try to argue for a share of the patent or something.
(Oh, and also, that federal law doesn’t help because: no one wants to stop the research here.)
Well and plus, do your descendants get to benefit monetarily from, basically, your physical body?
Like yvan points out informed consent laws within the medical community have come a long way from 1951. I wonder if today the hospital could harvest your cells and proceed to do research without you or your heirs knowledge/consent? I mean its not like harvesting organs.
@bluebears: I think even if your tissue/organs are used in research that leads to patents, you are barred from profiting from it in order to discourage the trafficking and sale of human tissue/organs. Pilgrim Soul, does that sound right?
@becky: but what about people who are paid to participate in medical research? Surely those people have tissue scrapings or whatnot done? Blood samples etc..
@bluebears: Yes, you can get paid to participate, but it’s just a fee and you give them the right to use your blood or tissue samples. The subjects of the study don’t get a royalty or any kind of share in the profits when the company makes a gazillion bucks off the final product.
Well yeah that’s what I mean. Perhaps (legally speaking) Henrietta Lacks would deserve some sort of compensation (since they used her cells as if she had voluntarily consented to be part of some medical research study)however, I doubt that her heirs would qualify. I think the issue is, since she never signed anything agreeing to surrender her medical info/tissue etc for any research in exchange for said flat fee, would she or her heirs be legally entitled to further compensation? I think you could argue they could be.
I mean people sign consent forms and are given a flat fee specifically so they can’t come after the researchers/drug makers/hospitals etc later in a court of law.
That being said, I know the point of the post was to point out the cosmic imbalance and unfairness of the situation. That Lacks cells led to medical advancements that her own family has been unable to benefit from due to unequal treatment that is systematic in this country.
I’m obsessed by this book, I’m currently reading it and it’s brilliant. I can not recommend it enough, it’s a great piece of reporting and an incredible (if at times incredibly depressing) story. Everyone should read it, seriously.
Sorry, guys, I was in the subway. So, the rule is that if one is harvesting the tissue for primarily research purposes, then yes, the doctors have to seek your informed consent, etc, etc. And there are all sorts of ethical review boards in the interior of scientific research institutions whose job it is to supervise the parameters of that consent-seeking. But there’s a secondary problem here that most people aren’t aware of – i.e. when you have any kind of sample taken for diagnostic or other purposes than research, by the time that sample leaves your body it’s generally the case that you have no proprietary interest in it, and thus the rules about seeking consent to use that excised tissue/blood are a little more… lax. Because the procedure would have happened anyway, and I mean, say I keep my appendix – even if my cells have some magical property what the hell can I do with them?
And bluebears, yes, what I am saying is that this is one of those things where in fact the structure of the law as a process of abstraction can get very… oppressive. And unfair. Because no, in the abstract, I don’t know that your descendants should have a right to those cells, but in a society that predicates access to medical care on the access to money, that all gets a lot trickier.
@emilyanne – I should have taken you with me last night!
I was very sad to have to let my library hold copy go, as it came at a bad time and I knew I wouldn’t be able to read it. I was considering buying it anyway, and now I most definitely will. Also found out that Rebecca Skloot is coming to town next month and will speak at a bookstore and the science museum! Thanks for highlighting what sounds like an excellent book.
Hmmm … While I understand why they do not have any legal recourse which would lead to compensation, I still think that the institutions which have profited so incredibly off of Ms. Lacks exceptional capacity should do something to pass along their good fortune. They essentially stumbled on to this gift, and a fund for Ms. Lacks descendents and/or scholarships set up in her name and/or a project designed to provide basic health services to people who may now be in situations similar to those which led to Ms. Lacks death would be a gracious response.
But unexpected because we don’t hold institutions to the same standards as people.
I am now going to share this post with everyone I know. This sounds like the sort of book that ought to be required reading in high school or freshmen year of college.
A comparable situation today is that the blood of every newborn born in a hospital in this country is taken (just a drop, smeared on a little card) and tested for a variety of genetic diseases that, if caught early are treatable, but become much more serious the longer they remain uncaught. This is a big part of what the March of Dimes is all about – making sure that states are testing babies for these treatable diseases.
The blood, however, is kept by the states for a varying period of time (2-5 years, mostly) and is, in most states, available to scientists (divorced from identity). It’s also been used to identify kidnap victims or remains. Until pretty recently, no one outside the government and scientific community knew that the blood was kept, and it was a minor controversy. After all, the idea that the government is holding onto your little innocent’s DNA was unnerving. I think there are a few states that have opt-outs, but since most people still don’t know the samples are kept, why would they know to opt-out?
This is probably an area where the public good clearly outweighs the minimal privacy concerns, but I think it’s an interesting case since the subjects are certainly incapable of consent and the parents are mostly ignorant of the issue.
If you’re going to say that something like giving up your medical waste is at no cost to you but is incumbent upon us all as humans because we are part of a larger community of humans who should help each other if it takes nothing from us, no man is an island, etc, then I think that you have to make the argument that health care is a human right and we all deserve it. Because if we should give up our right to our cells, or our family’s cells, because of “the greater good,” then certainly there is an idea that there is a greater good that we should live up to. And if the greater good involves the health of everybody, then clearly the greater good has to include health care.
So everyone who thinks that Lacks’ cells should be continued to be used by the medical community without benefiting her family directly (via compensation) or indirectly (via getting the vaccines her cells helped develop), should also believe that universal health care should be established.
Cimorene, obvs preaching to the converted. I don’t know how y’all live like this, I really don’t.
Oh yes, I assume everyone here feels as I do about heath care.
Sometimes when I write comments, I imagine that I’m talking to a conservative who disagrees with me, and I can accidentally get into the whole “so beat that you fucker” tone.
That’s remarkable. As a biology major, I’ve been taught in class after class about immortal cell lines and how cervical cancer cells from a woman in the fifties are still being used today. Yet no one ever mentions the woman–just her cells. This is the first I’ve even heard her name. So sad to hear that she died and her family didn’t benefit from this. I wish I was more suprised.
I haven’t read the book yet, but do want to point out that “harvesting cells” can mean ‘doing a biopsy’ or ‘removing a tumor.’ So it’s not just about giving up your “rights” for the greater good. It’s also about your own medical benefit. You could refuse to give up your “rights” to your “family cells,” but then you keep your tumor, I guess.
And, while I generally hate drug companies, I’ll defend them a little in this case. I don’t think that they just “stumbled upon” these cells exactly. Someone had to notice they were special. Someone else had to think up ways the specialness was useful. Someone else had to do reasearch on whether the specialness was applicable outside the lab. Products had to be manufactured, tested, etc. All of that takes money. A lot was likely invested before there was any profit, and there was a chance that there would not be a profit. Drug companies spend a lot of money on stupid crap, but I do think they’re entitled to some profit when they actually invest money to produce something helpful.
What I took away from this excellent post wasn’t about the legal issues. It was a very clear picture of our society and of a medical establishment that simply shrugs at the thought of a family struggling to this degree. At any time in the last five decades any of the medical research corporations, labs, clinics, medical schools, or medical professionals who were touched by this line and related research could have helped that family financially, just because it would be the decent thing to do. But we don’t live in that kind of world. And this post illuminated that beautifully.
PS: thanks for the explanations.
Cimorene: “If you’re going to say that something like giving up your medical waste is at no cost to you but is incumbent upon us all as humans because we are part of a larger community of humans who should help each other if it takes nothing from us, no man is an island, etc, then I think that you have to make the argument that health care is a human right and we all deserve it. Because if we should give up our right to our cells, or our family’s cells, because of “the greater good,” then certainly there is an idea that there is a greater good that we should live up to. And if the greater good involves the health of everybody, then clearly the greater good has to include health care.”
Agreed. Every word.
Th UK’s NHS has a lot of problems, but reading about issues like this makes me very happy to pay National Insurance and know that if I (or anyone else) turns up at hospital get treated whether we’ve paid in or not. I know it’s not the point of this article, but thinking about people who need health care and can’t afford it and how desperate they must feel make me very sad.
PSoul, I wish I was there with you.
The book is amazing. And I’m glad that there is finally recognition for the contribution that Henrietta Lacks has made.
I don’t like that at any point she was never asked or could give consent to the use of her tissue.
I realy like that the pioneering work for vaccines like polio, and other scientific and medical advances are here in our historical moment because of Henrietta Lacks, a woman of colour.
I wanted to read the book before saying this definitively, but @pedimd: in fact the harvesting in this case was just that, a harvesting. It occurred after Henrietta had been biopsied and, as I said above, during the treatment, for the express purpose of research.
I was momentarily puzzled as to why I recognized the name in the subject line, but quickly realized why. I am a first year PhD student doing biological research, and I recently wondered what this “HeLa” cell line was that everyone around me was talking about – the capitalization particularly caught my eye, so I checked it on Wikipedia and read the brief piece they have on Henrietta Lacks’s story. I was surprised and intrigued by the cells’ origins – such a random person to be housing such a nearly magical medical gift. HeLa cells are fascinating from an entirely different perspective as well – due to their very robust nature, there have been many issues with HeLa cells infecting other cell lines and impacting research results in many and unpredictable ways. It’s estimated that 10-20% of cell lines are infected with HeLa, which blows my mind – I’m currently working with a few cancer cell lines and it’s sobering to think that the results could be so thoroughly skewed.
Anyway, that’s the scientist in me at work. Thank you for bringing to light what I could tell would be a fascinating and complex story; I’m glad to see that someone has taken it on and is bringing it to the light.