Today, in recognition of #ShutDownSTEM, I hope you’ll join me in reflecting on the disturbing irony that science academia (as a whole) is reluctant to hire, train, and provide a supportive atmosphere for Black researchers, yet labs around the world have no problem using a cell line derived from a Black woman who didn’t give her consent – Henrietta Lacks (heard of HeLa cells?). Black scientists – to this day – are excluded outright from prestigious schools and institutions, or, if they “make it” to top academic positions, they’re often met with hostility, microagressions, and a lack of care for their wants and needs. Yet, in the labs of those institutions, the same workers who do not take time & effort to adequately care about their Black colleagues spend hours and hours toiling away in cell culture hoods, taking great care to protect the HeLa cells their research projects depend on, without even acknowledging these cells’ origin, thereby protecting the “open secret” of a history of racism and oppression.
#ShutDownSTEM is a grassroots movement to say things like this need to stop. We can’t keep ignoring the second-class treatment of the Black community. Systemic racism is real – and it’s everywhere – it’s not just carried out by some police officers on the streets – it’s carried out by researchers and administrators at some of the greatest academic institutions in the world. It’s not okay when police act racistly – and it’s heartwarming to see people around the world come out and support anti-police brutality through #BlackLivesMatter (but remember, words aren’t enough – true reform is needed). And it also isn’t okay when academia acts racistly.
Before people start to push back, I’m not saying that all police or all academic researchers and administrators are racist – I’m especially not saying they’re all racist on purpose. But when you grow up and live in a society based upon racist ideals, a society literally built by the unpaid labor of Black people with the premise that they’re less than human, it really shouldn’t come as a surprise that anti-Black prejudice is deeply entrenched in all aspects of our society, so deep and so long-standing that it has become institutionalized – that it’s become “normal.”
You can’t just not be explicitly racist and think your job’s done – you need to be ACTIVELY *anti-racist* – and you can start by noticing instances in your workplace where inequality is on display – easy to see if you allow yourself to be uncomfortable (yes, White people – we need to let ourselves be uncomfortable – we’ve become much too comfortable in a society built upon the near constant discomfort of the Black community).
Just like the AA slogan – the first step is recognizing there’s a problem. And, once you allow yourself to see it, signs of a problem are really on full display – finding evidence of racism might be looking around your institute and being able to count on one hand the number of Black workers – and on one finger the number of those Black workers who are on the faculty – or it might be looking into the cell culture incubator and seeing dishes of cells marked “HeLa.” Today, I want to tell you the story of those cells and the Black woman they come from, Henrietta Lacks.
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). 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 the input of the Black community.
Which brings me to a point about today. We need to let the Black community lead in this movement – we need to make their voices the loudest – but this doesn’t mean that we need to go up to our Black friends and ask what we should be doing. That “White people wake-up-ing” is LABOR – emotional and practical! And it’s privileged of us to expect them to just do that for us for free – on top of all the other work they’re doing – the pain and suffering they’re going through. So, instead of burdening them, go look up all the work they’ve ALREADY DONE! This movement might have gotten more White people interested, but Black people have been offering for years and years and years. We just weren’t listening enough.
The idea of #ShutDownSTEM is that academic researchers take a day to stop “business as usual” – read up on the literature, etc. – and develop actionable plans to come back as not-usual. And they make it really easy to find resources: precompiled lists of books, articles, documentaries, podcasts https://www.shutdownstem.com/
One of my favorites is “White Academia: Do Better.” by Jasmine Roberts https://bit.ly/2AVlKcE
And there are resources for all people, even if you aren’t a scientist
here are some more:
anti-racism resources: bit.ly/ANTIRACISMRESOURCES
anti-racism resource guide: https://bit.ly/2UtppoI
I really hope I said this all okay. I care from the bottom of my heart and am trying to always do the right thing but I’m still learning what that means and am not ashamed to admit this because learning is not something to be ashamed of. Doing nothing is. So I hope those reading this post and in need of learning too will go read those posts, books, etc. As to my Black colleagues – thank you so much for all you do and I appreciate you and am thinking of you. And I hope that I can do some small part to help make STEM (and society in general) a better, more just environment for you because you deserve to be here.
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. We cannot keep placing the burden of confronting racism on those who are oppressed. We’ve burdened them enough. I hope #ShutDownSTEM can serve as a wakeup call and lead to real action as opposed to just lip service and PR stunts. Please, please, please check out those links. 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.
Sorry this got long and rambly but I’ve been taking today to reflect and these are some of my thoughts – and helping share Henrietta Lacks’ story was a small, yet concrete action I could take as part of my plan to become more anti-racist. But I just wanted to end by saying her story is not mine and I hope that I have been able to tell it in a way that honors her legacy.