Henrietta Lacks Seems Like A Nice Person, But Not A Scientific Hero

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Henrietta Lacks was a black woman who died of cancer in 1951. During her treatment, doctors took a sample of the cancer. The sample ended up with a researcher who noticed the cells were much more resilient than any other cell type then known, cancerous or otherwise. This made them extremely useful for biology experiments, and now a substantial portion of world bio research is done on cells descended from Lacks’ cancer.

It wasn’t typical to ask patient consent in the 1950s, and nobody asked Henrietta or her family for consent to sample her cells or to use them for research. This has become a typical cautionary tale of bad scientific ethics (also probably racism and sexism). Nobody compensated her family, and none of the windfall produced by researching her cells went to them. Everybody talked about HeLa cells, the amazing cell line that makes research much more effective, and nobody talked about Henrietta Lacks, the person. Companies published the HeLa cells’ DNA, and records of Lacks’ cancer, without asking family members.

It would be an understatement to say that has since been corrected. There have been hundreds of articles talking about how racist and disgusting science is for not treating Lacks’ family better or acknowledging Henrietta the person - see for example this article in Nature saying that Science Must Right A Historical Wrong by various things including “celebrating her life and legacy”:

“I want scientists to acknowledge that HeLa cells came from an African American woman who was flesh and blood, who had a family and who had a story,” her granddaughter Jeri Lacks-Whye told Nature.

And there is so much to her story. Henrietta Lacks loved to cook — spaghetti was a favourite — and she loved to dance, often with one of her five children in her arms. She dressed stylishly and wore red nail polish. She was the emotional and psychological centre of a home where the extended family gathered and where the door was always open to anyone in need.

Well, her life and legacy are now successfully being acknowledged and celebrated. Congress passed a resolution honoring Lacks in 1997. She has received honorary degrees, the WHO’s Director General Award, and membership in the National Women’s Hall Of Fame. Atlanta declared October 11 “Henrietta Lacks Day”. There is a high school named after her in Washington, a plaza named after her in Virginia, and an asteroid named after her somewhere between Mars and Jupiter. In 2014, at the 9th annual Henrietta Lacks Memorial Lecture, the dean of Johns Hopkins announced the college’s new research building would be named after Lacks, saying:

We at Johns Hopkins are profoundly grateful to the Lacks family for their partnership as we continue to learn from Mrs. Lacks's life and to honor her enduring legacy

Also:

On March 15, 2022, United States Rep. Kwesi Mfume (D-Md) filed legislation to posthumously award the Congressional Gold Medal to Henrietta Lacks for her distinguished contributions to science. The award is one of the most prestigious civilian honors given by the United States government

But honors and prizes are empty without a material show of commitment, and the Lacks family is requesting compensation for their matriarch’s sacrifice. They have requested the extremely reasonable sum of 250 billion dollars, with the Lawyers’ Committee for Civil Rights approvingly saying they “deserve justice after decades of medical exploitation”.

Everything I have read about Henrietta Lacks the person - and boy is there a lot out there - suggests she was a wonderful person who was very nice. Nothing I am about to say detracts from that. But is she a hero of science?

I think there’s a strong case for no. She did nothing heroic, unusual, or science-promoting. She just, through no effort of her own, happened to get a weird cancer. If she had any virtues - and it seems that she did - they are totally unrelated to why she has gone down in history. The mutations that made her cancer special were total random chance. Giving her a Congressional Gold Medal for services to science would be like giving a lottery winner a Congressional Gold Medal for services to the economy.

People sometimes idolize martyrs and victims, but she’s not even interesting as a martyr or victim. If I understand correctly, her first cell sample was taken as a routine part of her medical treatment; a second sample was taken after her death. She didn’t suffer any unnecessary pain or harm from the procedure. Anybody who agrees to let a third-year medical student practice digital rectal examination on them has suffered more for science than she did.

And whatever heroism she may or may not have had is irrelevant to her family. It’s possible that her family should get the right to extort the world for $250 billion, for the same reason various oil sheiks collectively get to extort the world for $250 billion - because it’s hard to create a theory of property rights that works well enough to run an economy off of, but doesn’t grant stupid windfalls to people who happen to own interesting cells/oil or be related to those who do. But we should treat these people the same way we treat rich people who find tax loopholes: we are forced by law to acknowledge their claims, but they are annoying and not heroes in any way. If the loopholes get closed, or they forget to exploit the loophole one time, no injustice has been done, and they are the least sympathetic of victims. A thousand articles talk about how unfair it is that some members of the Lacks family struggle to get healthcare; I agree this is bad, but I cannot see anything that makes it worse than all the millions of other people who struggle to get healthcare.

(potential counterargument: rich people’s kids do get good healthcare just because of who they’re related to. Probably this is unfair in some sense, but given that our civilization tolerates this unfairness, is it meta-unfair to deny the Lacks family in particular the right to get in on the grift? I think this reduces to “Lacks should have been paid for her cells”, but in fact I don’t think there’s a market in medical specimens, and even if Lacks’ had been treated according to the best principles of modern medical ethics I don’t think she would have had the option to sell. You can think of the Lacks family’s position as requesting the creation of a new type of alienable commercializable property right that encloses a previously common resource - although the list of people you would expect to be in favor of vs. against such a thing is the opposite of where most people end up on their case in particular. Probably this is because nobody think people being insufficiently incentivized to donate specimens is much of a problem, but someone should actually think about this.)

What’s the case for her being a hero? I think it would agree with everything in the case against, then saying this is normal and everything about heroism is like this. We consider Einstein heroic for great scientific discoveries, but (let’s say for the sake of argument) he was just born with very unusual genetics that made his brain cells extra smart and creative. How is this better than very unusual genetics that make your cancer cells extra hardy and researchable?

I think a philosophical argument here would have to go through the idea that we try to achieve the same things as our role models. If the best way to be remembered after your death is to discover new fundamental theories of the universe, kids might study hard, think big, and focus on important problems. If the best way to be remembered after your death is to get a really weird cancer, kids might - what? Start smoking and move to Chernobyl? Sounds bad.

But I find myself caring less about the philosophical argument than a more emotional argument, which is - every day I see amazing people in medicine who are underappreciated. The nurses who work triple normal hours during the COVID pandemic, or doctors who go on mission trips to Africa to cure tropical diseases for zero pay. None of these people have statues; Henrietta Lacks has one in the US and another in Britain.

Jonas Salk used Henrietta Lacks’ cells to invent a vaccine for polio, likely saving millions of lives. He refused to patent it (despite potential value of $7 billion) because he wanted to make it as widely available as possible. Google Trends says he gets less than a quarter as much search engine interest as Lacks.

Some people are going to tell me I’m underplaying the race angle, and that black women need heroes. I think this is the worst part. There are thousands of black female doctors, black female scientists, etc. Whenever we recognize white people who have contributed to medicine, it’s Brilliant Dr. So-And-So Who Cured A Deadly Disease. What message does it send black women if the most prominent medical hero that society gives them is someone with zero medical ability or medicine-related-virtues, whose only contribution was passively letting someone else take a clump of their cells without her knowledge? Did you know a black woman, Mattiedna Johnson, helped cure scarlet fever? No you did not, because whenever people want to talk about black women in medicine they talk about Henrietta Lacks - who was not, technically, in medicine.

This is also how I feel about that one woman who donated her hair and it got used to make World War II instruments. It’s a cute story, but before you talk about how underrecognized and underappreciated she is and how this is an affront to all women everywhere, do remember that World War II was also the time where millions of people volunteered to go to horrible foreign countries where they would probably get killed. I think medicine is like this too.