I can’t let Black History Month go by without telling the story of Henrietta Lacks. You might “know” her better by the abbreviation HeLa, given to the cell line derived from her tumor. Cells which have led to life-saving discoveries, yet cells which she did not consent to give. Cells which her family was not informed of until researchers wanted to do research on her family members. Cells which serve as a lasting reminder of the ways in which racism seep into every aspect of biomedical research, even seeping into our sterile cell culture hoods.

Before I go too deep into the story, I want to give a shout-out to Rebecca Skloot who wrote the phenomenal book The Immortal Life of Henrietta Lacks. I read it years ago and, thanks to it, I have never forgotten what HeLa stands for – all the things it stands for – HEnrietta LAcks literally, but also racism, misogyny, and one in a long line of wrongs inflicted on Black people, women in particular. A line of wrongs that continues to this day – Black women are more likely to die during childbirth, are less likely to be given pain medication, the list goes on and on https://bit.ly/2Uuu3mH⠀

And each wrong deserves attention and action. But today I’m going to focus on HeLa cells, because their use is SO SO SO prevalent in my field. They’ve become the most widely used human cell line, yet so many people don’t know the backstory. ⠀

Henrietta Lacks was a poor cotton farmer from southern Virginia. When she was 30 she started having symptoms of uterine pain & bleeding and went to a public Blacks-only ward at Johns Hopkins – one of the only treatment centers available to her. And they found out she had cervical cancer – she was treated with the conventional standard of care, but it didn’t help. She was only 31, with 5 young children, when she died less than a year late, in 1951. ⠀

As part of her treatment the doctor took a biopsy – *to test for cancer* – NOT to do any research on – as far as she knew. And then they took a couple more samples later. They never asked her if they could use her cells for research purposes. They never asked her family if they could do research on her cells after her death – never even told the family. But they did a lot of research using those cells. Because those cells were able to do something no human cells had been able to do before – grow indefinitely in a lab.⠀

For many reasons, it’s really useful to be able to study things inside of cells that you grow in a dish. When you’re studying interconnected pathways and stuff, cells allow you to manipulate those pathways and they let you see how changing one thing, adding a drug, etc. changes all sorts of aspects in the cell that you wouldn’t be able to see if you were just studying the individual molecule the drug bound to. So being able to “culture” cells (grow them in a lab) lets you see if a drug, say, affects cell growth. But in order to test growth you need them to be able to grow in a dish – and to test any of these things, you need to be able to keep the cells alive and multiplying so that you have an endless stock. ⠀

The ability for a cell to copy its contents and then divide, splitting those contents up into 2 daughter cells is called “replication” – and if you stick healthy cells in a dish they will only replicate a few times (it’s called the Hayflick limit). Even most cancer cells will quit. But some cancer cells are able to keep replicating over and over and over and over because their “Hayflick brakes” have been shut off. Researchers had been trying for some time to find human cells that could do this and Henrietta’s cells were the first ones they found had this “immortality” – in particular it was discovered by a doctor and cancer researcher named George Otto Gey who got that sample of Henrietta’s tumor. ⠀

Starting from those “few” initial cells in that original tumor, those cells kept replicating and replicating and replicating. The researchers shared those cells with other researchers and they found their way around the country. And the world. The NIH has a map where you can see the number of papers published using HeLa cells in each country. https://bit.ly/2UxsO65 

And there are a LOT of papers. Between 1953 and 2018, over 110,000 papers cited the use of HeLa cells https://bit.ly/3fcn4Xu  ⠀

It’s been estimated that over 50 million metric tons of HeLa cells have been grown and that – if you laid these cells out end to end you’d wrap around the Earth over 3 times. And this was 10 years ago! https://n.pr/3dQwiYV The cells have been used to develop vaccines, HIV drugs, Parkinson’s drugs, the list goes on and on. And companies have profited. ⠀

The Hopkins researchers have never directly profited from selling these cells and they don’t “own rights” to HeLa cells or anything. But companies do cell HeLa cells at a profit (charging for the TLC used to keep the cells happy and growing before they ship you some, etc). HeLa cells were the first human biological product to be bought and sold. ⠀

And, even though Hopkins didn’t profit from that stuff, it’s likely that a lot of the research carried out in biomedical science labs throughout Hopkins have profited indirectly from HeLa cells because HeLa cells have become the “go to” human cell line for studying basically everything in institutions around the works. SO much work has been done with these cells – so many of the “medical breakthroughs” we laud were made possible by these cells – and many companies *do* profit off of these. Billions of dollars worth of profit, yet her family hasn’t seen a penny of that. You can argue about whether or not people should have a right to some of the profit that comes from tissues they donated – but Henrietta did NOT “donate” these cells. She had no say in any of this, and every time scientists use HeLa cells for their research without reflecting on this, they are glossing over a woman’s life, her family’s lives, and a whole history of racial injustice. ⠀

It’s the family’s story that really gets you. HeLa cells got really popular with the science community pretty fast, but the actual identity of the patient behind the HeLa cells was kept secret for a while – you might have learned a decoy story that they came from a woman with a name like Helen Lane. https://bit.ly/3hhnGgg ⠀

It wasn’t until the 1970s, 2 decades after her death that Henrietta’s family learned of it. And they learned about it in a disturbing way. Scientists wanted to study the DNA of Henrietta’s family and they did not explain things well – her husband, who had only had a 3rd grade education, was being informed through jargon-filled language. “Cells” as biological things were a totally foreign concept – but there was one term that he knew well – cancer – that disease that killed his wife. And he thought these researchers wanted to test to see if his son was at risk for the cancer. They kept calling the researchers to try to get their “cancer test results” and, after being brushed off, the story started to unravel and the family were left understandably shocked and confused – they were told their beloved relative, whom they had buried was still in some way alive in a lab? https://n.pr/3dQwiYV ⠀

I’ve gotten so used to the idea of cells growing in dishes, but that’s because it’s now commonplace and because I had the privilege of a great education. I can’t even imagine how confusing that must have been for family. And to hear that billions of dollars of profit were being made off of her cells, while her family suffered in poverty? And knowing the history of mistreatment of Black people by medical researchers?⠀

When you hear the phrase “Tuskegee experiments” you probably think about the Tuskegee syphilis study – a FEDERAL GOVERNMENT SPONSORED experiment which started in 1932 and went on until 1972!!!! only stopping due to public pushback. In this study, Black men with syphilis were denied treatment for the disease after a treatment was discovered (penicillin was established as a treatment in 1947) in order to study the disease’s “natural course.” https://bit.ly/2XNxGWC ⠀

And people wonder why Black people don’t trust medical researchers?⠀

But that wasn’t the only disturbing thing happening in Tuskegee – at that same campus at the same time one of the first large-scale ramp-ups of HeLa cell production was underway, used for producing the Polio vaccine. https://bit.ly/3fgthlb ⠀

The Polio vaccine is great, yes, as are the countless other medical and basic research advances made possible by these cells, but we can’t keep pretending they weren’t made possible by something morally reprehensible. It wasn’t *just* the initial use of her cells for research without her consent (which was sadly commonplace) that was awful. It was also the way her family was kept out of the loop and dismissed when they tried to ask questions. Much too often we dismiss or suppress the input of the Black community (and then have the audacity to say that there just aren’t Black people interested in and/or expert on the topic).

Some concluding remarks about HeLa cells – In 2013, a group of German researchers published Henrietta’s entire genome – her whole genetic blueprint – public for anyone to see – raising huge ethical and privacy problems, not just for Henrietta, but also for all of her family members who share some of that genetic information. The genomic information was withdrawn shortly after after the family raised these completely-legitimate-and-should-have-been-thought-of-by-the-researchers. The NIH then came to an agreement with the Lacks family whereby researchers can apply to access the genetic information and requests are overseen by a panel including members of Lacks family. The researchers also have to acknowledge and thank the Lacks family in any ensuing papers  https://go.nature.com/3cLuKOE ⠀

This was three years after Rebecca Skloot wrote The Immortal Life of Henrietta Lacks, which was turned into a movie in 2017 (starring Oprah). I highly encourage you to read the book – Skloot did a ton of ton of research into Henrietta, her family, and the research. It took her years to gain Henrietta’s daughter, Deborah’s, trust and Deborah played a large role in making the book possible. While Deborah is supportive of the book, as are many of Henrietta’s other family members, there are members of the family who disagree with some of the portrayals. And there are family members who disagree on how HeLa research should be treated moving forward. https://bit.ly/37hFH9w ⠀

Speaking of moving forward, Johns Hopkins, for its part, has established outreach programs including an annual “Henrietta Lacks Day” and Skloot set up a Henrietta Lacks scholarship fund for Henrietta’s descendants. and others who may be under similar circumstances http://henriettalacksfoundation.org/ ⠀

HeLa cells were first immortal human cells found, but there have since been others discovered, yet HeLa remains the go-to. There have been pushes to use alternative cell lines as well as individual labs, institutions, etc. taking the initiative to at least donate money to the Lack’s family when they use the cells. ⠀

This story disturbs me on so many levels. And it’s just a single story. Some things have changed – patients now have to give consent for tissues to be taken for research purposes for example. But is that really *informed* consent? How many times have doctors really taken the time to go through consent forms with you? This is a problem for people of all races which must be addressed, but we cannot pretend like Black Americans don’t face additional problems with our health care system. Henrietta Lacks went to Johns Hopkins because, as a poor black woman, this public hospital was pretty much her only option. And, although she received the standard of care in terms of cancer treatment and that side of the medical quality isn’t disputed (by most at least) – she should have had options. ⠀

There shouldn’t have been just one place to go. And yet, to this day, many Black Americans only have one place to go. And they likely see few Black physicians there when they do because in medicine, as well as science, Black people are grossly underrepresented. And this needs to change. But it’s not going to change if we just keep focusing on pumping more Black students into the STEM pipeline if we don’t repair that pipeline at every step of the way – supporting researchers at all stages – and making it so that the pipeline really can reach all the way to the top. ⠀

So, academia, if you haven’t been listening to our Black colleagues – start listening. If you haven’t been reading, start reading. anti-racist resources here: https://bit.ly/helacellhistory 

And please, remember Henrietta Lacks – never read the name “HeLa” without thinking of Henrietta, her family, and the systemic racism that’s everywhere in our society – even in our tissue culture hoods. We need to change the culture. ⠀

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