Righting an Historical Wrong on International Womens’ Day in gratitude to and recognition of Henrietta Lacks.

This morning we wake up to stories in the international media about how Prince Harry and his wife Meghan were questioned about what colour their unborn child was likely to be. Both sides of my family have faced the same question over the last 50 years. In 1969 my unmarried mother was set to give me up for adoption until the nurses told her to see me just once. I’m sure to this day that it was because my skin had turned out white that she decided to keep me. At least that way the only question was why was she unmarried, and not why was her illigitimate baby black. Eight years later when my Jamaican Dad married a white Canadian lady, she was asked in a public swimming pool whether she was about to give birth to a zebra. have we really not moved on in 50 years?

But at least Harry and Meghan’s children, my sister, brother and myself were all born in a hospital and our parents received medical care. The same cannot be said of Henrietta Lacks 100 years ago when she found herself in one a a handful of hospitals that would treat back people. How ironic, then, that it is thanks to her that so many women of all colours, nationalities and cultures owe their lives to her yet have probably never even heard of her.

Henrietta Lacks (aka Loretta Pleasant) was an African-American woman born in Virginia in 1920. When she was 4 her mother died and, unable to cope alone with all their children, her father sent Henrietta to live with her maternal grandfather. They lived in a log cabin previously used as slave quarters on a plantation that had been owned by her white great-grandfather and great uncle.

Over the years Henrietta married and had five children, but she had begun to complain about abdominal pain. When her fifth child was just 4 months old, the pain had not gone away so she went to the only hospital in the area where black people could receive medical care, Johns Hopkins in Baltimore.  She was admitted for routine tests in August 1951 but after a common but catastrophic misdiagnosis, she never came out of the hospital. She died in October 1951 at the age of 31. She was buried in an unmarked grave in Lackstown, Virginia. The town had been given its name by the slave-owning members of the Lacks family. It was common practice for all slaves on a plantation to be given the name of their 'owners'.

Morally Questionable Research

What neither Henrietta nor her family knew for generations to come was that the doctor treating her had taken tissue samples from her and passed them to scientists for research without her consent.

When Henrietta’s cells were examined, they were found to be unique in their unusual ability to reproduce very rapidly. Up until that time, cancer cells only lived for a few days under laboratory conditions, so research was limited. Such was the extent of the cells' ability to be divided repeatedly without dying that they became known as ‘immortal’ cells. 

Not only were her actual samples used from when she was alive, but when the doctors and scientists realised the potential insights that could be gained, they conducted an autopsy specifically to remove more cells, without the permission of her grieving family. 

What is even more questionable is that subsequently, the actual genome was extracted and the cells were put into mass production and distributed to scientists around the world and became known as HeLa cells, taking the first two letters of her names.

Medical Research

HeLa cells have been instrumental in medical breakthroughs such as the polio vaccine and are even being used in Covid-19 research. They have not only been researched for cancer treatment, but also for AIDS, the effects of radiation and other toxic materials and even gene mapping. Indeed HeLa cells were the first human cells to be successfully cloned in 1955. There are now over 11,000 patents involving HeLa cells. Money has certainly been made, but none whatsoever went to her family.

For decades her family and descendants knew nothing of this. The first they heard was in 1975 when several of them were contacted for blood samples (because HeLa cells had become contaminated with other cells during experimentation.). Family members became curious about why so many of them had suddenly been contacted and they started trying to find out why the scientists had such a sudden interest in them.

It was not until 1996 that the family received any explanation and understanding of what had taken place. The Morehouse School of Medicine held the first HeLa Women’s Health Conference in which they recognized the “valuable contribution made by African Americans to medical research and clinical practice".

In March 2013 researchers published the DNA Sequence of the genome of a strain of HeLa cells and the first the family heard was when the author contacted them, by which time the data were already publicly available. In the same year, a second study group funded by the National Institute of Health wanted to publish their findings in spite of the family already having raised concerns about what data were held and what implications there would be for all of Henrietta’s descendants even over years to come.

The family had to fight for their right to any control over the publication of their family’s DNA data and eventually a concession was made that two of them could sit on the committee and have a degree of influence regulating access to the sequence of genetic data that is released publicly. 

It is not possible to say whether circumstances would had been different had she been white: whether informed consent would have been sought, whether her family would have received financial compensation, whether she would have been given a birthstone sooner.

What is clear is that without her, many medical breakthroughs would not have happened as soon as they did. But just like the medical breakthoughs that came out of the concentration camps in Germany, the question we all need to ask is how we can respect the lives of those whose misfortune has led to our fortune? What do we do with insight that was gained through such immoral and ill-gotten practices when to discard it would be to have their lives being taken in vain, but to use it seems to be somehow condoning those practices?

Eventual Recognition

·      In 2010, the Johns Hopkins Institute for Clinical and Translational Research established the annual Henrietta Lacks Memorial Lecture Series] to honour Henrietta Lacks and the global impact of HeLa cells on medicine and research.

·      In 2011, Morgan State University in Baltimore granted Lacks a posthumous honorary doctorate in public service.

·      2011 the Evergreen School District in Vancouver, Washington, named their new high school focused on medical careers the Henrietta Lacks Health and Bioscience High School, becoming the first organization to memorialize her publicly by naming a school in her honour

·      In 2014 Lacks was inducted into the Maryland Women's Hall of Fame

·      In 2017 a minor planet in the main asteroid belt was named "359426 Lacks" in her honour.

·      In 2018 The New York Times published a belated obituary for her as part of the Overlooked history project

·      2018 the National Portrait Gallery and the National Museum of African-American History and Culture jointly announced the accession of a portrait of Lacks by Kadir Nelson.

·      On October 6, 2018 Johns Hopkins University announced plans to name a research building in honour of Lack. At the event it was announced that: “Through her life and her immortal cells, Henrietta Lacks made an immeasurable impact on science and medicine that has touched countless lives around the world… This building will stand as a testament to her transformative impact on scientific discovery and the ethics that must undergird its pursuit. 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 honour her enduring legacy." The building will adjoin the Berman Institute of Bioethics' Deering Hall, located at the corner of Ashland and Rutland Avenues and "will support programs that enhance participation and partnership with members of the community in research that can benefit the community, as well as extend the opportunities to further study and promote research ethics and community engagement in research through an expansion of the Berman Institute and its work.”

·      In 2020 Lacks was inducted into the National Women's Hall of Fame

·      In 2021 the Henrietta Lacks Enhancing Cancer Research Act of 2019 became law. It states the Government Accountability Office must complete a study about barriers to participation that exist in cancer clinical trials that are federally funded for populations that have been underrepresented in such trials.

Whilst I am pleased to see that these honours recognize Henrietta as well as the moral questions that this case has raised, I cannot help but notice that just as my Dad’s family name is McKenzie after the slavers who ‘owned’ our ancestors, so Henrietta is recognized not by her genealogical name, but by the name of the slavers who owned the plantation and the town she lived in.