Personally I think the story of Henrietta Lacks could be the plot to Jordan Peele’s next blockbuster movie. You’ve probably already seen, or at least heard of, Get Out, Peele’s breakout movie that saw the Armitage family harvest black bodies. Well the real life case of Henrietta Lacks gives eerily similar vibes.
Henrietta Lacks was born in 1920 to a poor African American family in Virginia. Over her lifetime she had five kids. In 1951 she passed away from cervical cancer. Her kids were not her only legacy however. Her cells went on to form the first immortal cell line, named HeLa.
She was treated at John Hopkins hospital, the only one to treat black patients at the time. Dr George Otto Gey worked on her case. As per procedure she had cell samples taken from her womb, one healthy and one cancerous, for testing. What Gey actually found though was that her cells divided faster than normal and could be kept alive longer. From one cell an immortal cell line was created. However, with all the testing her cells have undergone, no one knows exactly why her cells reproduce so quickly. So many scientific breakthroughs have been made possible thanks to her. Allergen testing. Aids. Polio. Cancer.
What’s the problem exactly? All this was done without her consent and her family were also none the wiser. In fact, in 1980 her family’s medical records were also published, a clear breach of privacy. In 2013 a laboratory took things a step further and published their genome.They were never compensated either.
Do I think something like this could happen again? Absolutely. In recent years there’s been a rise in at home tests, from Ancestry.com to 23&Me. We’re also living in a time where data is more valuable than ever. And in countries where healthcare is largely privatised, it’s a weird predicament to be in. It’s not always clear what companies intend to do with your data and I don’t know a single person who can fully read a company’s privacy agreement and know 100% what they’re getting into. On one hand it’s great that people can find out more about themselves, on the other you’re unknowingly inviting big tech companies to do the same.
Author Rebecca Skloot founded the HeLa foundation in her name, to support other families who have found themselves being used in other scientific research pursuits. It turns out that HeLa is not the only case. For example there was also the Tuskegee Syphilis Experiments which several black men took part in, under the guise that they were being treated for ‘bad blood’ which could actually include anemia as well as syphilis. Regardless they were not treated for their illnesses as they assumed they would be.
Whilst I’m still hoping for a Jordan Peele edition, there is a HBO film starring Oprah and a book called ‘The Immortal life of Henrietta Lacks’ by Rebecca Skloot if you’re interested in knowing more about Henrietta Lacks’ case.