Black Lives Matter.
I can’t disagree but as a Caucasian I’d suggest that my life matters too, however one Life matters to me, to you, to all of us regardless of ethnicity and tragically more than she would ever know.
Her name was Henrietta Lacks.
Heard of her? No, me neither, until very recently and entirely by accident when searching Google for something totally different. One glimpse of Henrietta’s life and contribution to humanity and I forgot what I was looking for, I still have, what she brought is far, far more important .
An African American woman, Loretta Pleasant, no-one quite knows how she adopted the name Henrietta, was born in Roanoke Virginia . When her mother died giving birth to the tenth child , her father, unable to cope on his own, moved to Clover Virginia where the children were distributed amongst relatives. Henrietta stayed with her grand father Tommy Lacks in a log cabin that had formerly been the slave quarters on a tobacco farm owned by her white great grandfather, she shared a room with two boys one of whom David , ” Day” Lacks , would later become her husband. Day and Henrietta moved to Maryland where Day worked in the Bethlehem Steel Works .
Henrietta sounded like a very normal women . Much loved, she delighted in cooking especially spaghetti, she liked to dance, often with her children in her arms . She was smart, a stylish dresser and delighted in red nail polish. Mostly though she was a wife and mother and was at the centre of her family, the fulcrum that brought it together .
In 1950 four months after giving birth to her fifth child Henrietta felt a lump like a knot in her abdomen. She attended Johns Hopkins Hospital which disgracefully was the only local facility that treated black people. Investigations found a mass in her cervix , a biopsy showed she had a malignant cancer. It was misdiagnosed and was a different form of cancer than they thought but the treatment apparently would not have differed. Henrietta died of the disease on October 4th 1951. She was 31.
Her exact burial place is not known though she is thought to have been buried close to her mother – a headstone was finally erected in 2010. the inscription reads
Henrietta Lacks, August 1, 1920 - October 4, 1951 In loving memory of a phenomenal woman, wife and mother who touched the lives of many. Here lies Henrietta Lacks (HeLa). Her immortal cells will continue to help mankind forever. Eternal Love and Admiration, From Your Family
And there is the hint of Henrietta’s importance to mankind, her immortal cells.
At some point some point, prior to her death, some of Henrietta’s genetic material arrived at the desk and microscope of Dr George Otto Gey a medical researcher . Prior to that point cells cultivated in a laboratory had a very short life, a few days at the most, far too short a time to undertake proper research on them.
To Gey’s astonishment Henrietta’s cells behaved differently doubling every day , they reproduced then they reproduced then they reproduced some more. You could divide it and it just kept coming back. Gey called a colleague and said “ I think I have found an Immortal cell.”
Suddenly, because of their longevity ,meaningful research could be undertaken using these cells. He called them “ HeLa” cells, for no other reason than it was his habit to name cells after the first two letters of patient first and last names .
Gey realised just how important this was and like any good scientist he shared the cells widely, not just in Maryland but across America then across the world.
In 1953 HeLa cells were the first human cells to be successfully cloned. By 1954 Jonas Salk was using HeLa cells to develop a polio vaccine, he created a cell producing “ factory “ from Henrietta’s cells. Others followed. Since the 1950s it is estimated that in excess of 50 metric tons of her cells have been produced. I can’t really visualise things like that so I looked up what 50 tons looks like, about two thirds the weight of the Space Shuttle, apparently.
Earlier this century a young woman called Erika Johnson was studying biology in her High School and her teacher told the class where the cells they were using came from . The cells in her hand were from her great grandmother. She said the realisation was surreal.
But the cells were used for much more than teaching.
HeLa cells were critical in developing in vitro fertilisation . Cancer research , Aids research , gene mapping, studying the effects of radiation , parvo virus vaccine for dogs , papilloma virus , zika , herpes , mumps , measles , xeno grafts, tamoxifen …the list of research and drugs dependent upon HeLa cells is endless and it all starts with Henrietta.
Appropriately Harald Zur Hausen received the Nobel prize in the 1980s for his work with HeLa cells that had lead to the HPV vaccine that is predicted to reduce the number of cervical cancer deaths by 70% . It doesn’t stop there, cosmetics , even human sensitivity to substances like glue, all tested with HeLa.
HeLa cells were sent in to space to judge the impact on human cells of space travel ….they divided even more quickly in zero gravity!
Most recently, research into COVID19 vaccines uses HeLa cells .
11,000 patents 60,000 articles increasing at a rate of 300 per months relate to research with what were originally Henrietta’s cells.
Henrietta you died aged 31 but your legacy will live for ever, shame you never knew. And there is the rub.
Henrietta’s cells were taken for research without her permission .
That isn’t a criticism of Dr Gey it was normal practice then that consent was not sought. Was there an element of racism there? Hard to tell, perhaps the same assumptions would be made on the behalf of any poor person or perhaps any patient in those days. I know the degree that I had to fight for my wife’s rights when she was medicated against her stated will while unconscious in the 1980s and we are; white, middle class, people. Brilliant and essential as the outcomes might be, unchecked, medical and scientific practice can at times demonstrate arrogance mind bogglingly distant from common sense and decency.
I sense though that perhaps in those days the route to observing the human rights of a woman of colour were even more opaque than her white sister. Are they still?
But let me repeat a statistic, 11,000 patents, those are products commercially sold for financial gain. Not only did Henrietta’s estate not benefit financially, for decades her family was not even consulted or aware of her contribution. Her name was used in medical scientific circles and publicly, her and family medical records were shared with the media.
Only in the 1970s when there was a contamination issue did the family become aware that there was some connection with Henrietta. Not that they were informed of the reasons why! Researchers were keen to talk and take samples from them. It took a family dinner party for them to realise they were all being approached with odd requests and they put two and two together .
It was only in 1981, when informed by the Lacks case that the US Government established the “Common Rule” which enforces informed consent to the use of patients details in research cases. But it is quite limited and efforts continue to this day to offer proper protection and consent requirements.
Of course that was a long time ago and medical and scientific ethics have improved, except that in 2013 researchers published the DNA sequence of the genome of a strain of HeLa cells without informing the family . The family discovered this when the author Rebecca Skloot ( see below) told them. The family objected , the publication was withdrawn . Jeri Lacks Whyte a grandchild of Henrietta said to the New York Times
“the biggest concern was privacy – what information was actually going to be out there about our grandmother, and what information they can obtain from her sequencing that will tell them about her children and grandchildren and going down the line.”
Responding to the family concerns and scientific importance of the application of genomic data the US National Institute of Health created a committee to oversee applications of the use of Henrietta’s material . Two members of the family sit on that committee and are part of the decision making process and every research paper now has to give acknowledgement to Henrietta’s contribution .
Established in 2010 there is now a Henrietta Lacks Foundation , there is an annual HeLa Conference dedicated to the valuable contribution made by African Americans to medical research and clinical practice .Atlanta observes a Henrietta Lacks Day on October 11th . In 2011 she was awarded a posthumous doctorate, a high school was named after her, an asteroid is named after her . In 2018 the New York Times published a belated obituary and in the same year John Hopkins University Medical School named its new research building after her . Her portrait hangs in the Smithsonian.
So history is catching up with Henrietta Lacks.
It is personally interesting and distressing that as a CEO of a vaccine organisation from 2006 to 2012 that I had absolutely no clue of Lack’s legacy . It is odd that of the hundreds of scientists and researchers who I met and worked with, of all colours , none ever mentioned her. Perhaps they were so wrapped up in the miracle of HeLa and its application that their curiosity about its provenance was never piqued?
It is quite some legacy. Millions of people’s lives saved or radically improved. Children born through in vitro. Prevention of the exact disease that killed her . Her contribution to Black Lives awareness is topically demonstrated when people of colour die disproportionately from COVID 19 and a vaccine is dependant upon her cells.
Other than her “ immortal” cells one of the greatest legacies is the awareness in the ethical debate that our understanding of what is ethical becomes historical and decays from the moment that we write of them, it is a constant process of measuring and revision .
The last word to her family her grandson Alfred Lacks Carter
“They were taken in a bad way but they are doing good for the world,”
Rest in Peace Henrietta
References should you wish to take this further :-
“ The Immortal Life of Henrietta Lacks “ A book by Rebecca Skloot 2017
Same title – a TV film I am informed available in Netflix with Oprah Winfrey and Rose Byrne
My lord, Steve – my lord. What an excellent person and subject to write about – you’ve placed all the information there for us, and links to follow up if we wish to.
The quote from her grandson covers it.
And, imagine the lass at school, realising she was working with her Great-grandmothers cells.
What a story, all round. And what a fine woman, and a fine looking woman she was, and is.
And – her cells are beautiful, too.
My lord, Steve – that knocked me for six. A great thing to read first thing in the morning.
We humans can be so damaging, and we can be so ……………productive too.
I need to absorb this story. Then read it again. Then absorb a bit more.
As ever thank you for your kind comments Bernie. For me once I knew the story a question arose immediately ” why didn’t I know this before?” Closely followed by another ….” where is the ethical debate right now?” I am not big on autobiographies but this woman’s story is just very special. Steve
Thanks Steve for sharing your “what I didn’t know I didn’t know” story and experience working in the field. I read Rebecca Skloot’s book when it came out – a remarkable account of a miscarriage of justice, but her grandson speaks wise words:
“They were taken in a bad way but they are doing good for the world,”
that is an interesting article, however, Henrietta Lacks’ race, nationality or sadly truncated life has no relevance to the story, interesting as it may be –primarily to her immediate family. As for the ‘unethical’ tissue sampling; taking a sample is standard practice for a biopsy on a suspected tumor, so, on the issue of consent, one assumes she was asked to give a sample for analysis. Otherwise it would have been taken as part of the post mortem procedure. So actually, the story is, a scientist noticed a cell sample was remarkable; the development of treatments was done by scientists; the cells were used along with thousands of other samples by science teachers in medical schools.
Personally, I don’t think you should shoe-horn BLM into an utterly unrelated story. BLM is a devisive movement and one that has precious little relevence in Britain. Whilst the UK is far from perfect, the situation isn’t comparible with America. If the subject of medical ethics and unwitting doners to our knowledge base is of concern, I would think it appropriate to have started with the millions of vivesected animals; or the tens of thousands of pyschiatric patents trepanned and/or subject to electro-shock therapy; the prisoners unwittingly dosed wth LSD; the troops irradiated to test the effects of atomic weapons (all in 1950s America). Some of these scenarios were replicated here (such as the release of flu strains on unwitting London commuters in the mid 1960s), others -such as the largely bogus science of vivesection continue unabated. Because all lives matter…
Hi Rosie , I wish I had known before as it very much related to the work the scientists I worked with did. The ethical issue is universal but I think it is also worthy of considering from a BLM approach too.. One of the things that struck me strongly in my job was the disproportionate degree of funding for animal health research that was dedicated to companion animals in the North and West in comparison with the very treatable diseases that affected the livestock on which the poorest billion people in the world are dependent .
All lives matter you are right spampampam. But you are technically wrong on the issue of permissions. Yes she would have given permission for the biopsied materials to be taken for analysis but for that purpose alone. She was not giving permission for her medical information to be shared because, she wasn’t asked. This was standard practice at the time, but it doesn’t make it right. If you read the book or see the film you will see it actually goes a lot further than that . On the BLM issue, I wouldn’t be so crass as to shoe horn anything into an article for the sake of it. Again I suggest ( and this is the reason that I gave the references) that a closer read or watch of those are attempted before you come to judgement. I cant make assumptions about your ethnicity so I will say this :- as a white man my view is largely irrelevant in terms of whether this is or is not relevant to BLM, the views of those who are Black are relevant and if this is their view then I need to accept that and work with it. Suggesting that BLM has “precious little relevance to Britain” suggest a degree of utopian myopia that doesn’t seem to reflect the facts around Black experience in the UK and I am being very generous in my critique of that comment . I agree with the sentiments of your latter comments, naturally but they aren’t relevant to Henrietta Lacks.
I sent your article to friend Howie (Firth), who answered……
“What a delight to read this Bernie – I learned so much from it, and it is put together with such thought and care. Really fascinating.
With best wishes, Howie”
I did ask if was OK for me to put it in the comments!
Absolutely Bernie, the more folk who know about Henrietta the better in my book …
Great article and thoroughly enlightening. Learnt a lot from it and indeed further reading a must. Thank you Steve .
Hi Hauwa – lovely to hear from you , thanks for your kind comments, trust all is going well with you? Steve