Henrietta Lacks’s descendant on her legacy – and Rebecca Skloot’s book

If you haven’t heard of Henrietta Lacks, then you should have. You are likely to owe your health, and possibly even your life, to her. Born into a Black tobacco farming family in Virginia, Lacks died from an aggressive form of cervical cancer in 1951, aged only 31. But she unwittingly left a remarkable legacy. Cells from her tumour – taken without her knowledge – had an extraordinary ability to grow in the lab. Known as HeLa cells, they were the first “immortal” human cell line and became central to countless medical breakthroughs, including covid-19 vaccines, cancer treatments and IVF. “She left a legacy that touched nearly every corner of modern medicine,” says her great-granddaughter, Veronica Robinson. “She had the gift that keeps on giving. But the fact that she was never asked for permission is one of the most painful parts of our family story.” At the time, few people, especially if they were Black, were informed about what was happening to their bodies in the medical setting. Advertisement Equally painful is the fact that, for more than 20 years, Lacks’s husband and children didn’t know that her cells were being kept alive in laboratories all around the world. Scientific institutions and companies were benefitting from discoveries made possible by HeLa cells, while her family often lacked access to healthcare. At the same time, the researchers who worked on these cells also knew little about the person behind them. That all changed in 2010, with the publication of Rebecca Skloot’s bestseller, The Immortal Life of Henrietta Lacks. Skloot had been obsessed with telling Lacks’s story ever since she learned about HeLa cells as a student, and she spent more than a decade meticulously uncovering details of Lacks’s life. The result is a rich narrative that weaves the personal histories of Lacks and her five children with the story of the quest to grow immortal cell lines. Crucially, the book also tackles difficult questions about the ownership of tissues taken from our bodies, consent in medical research and the shocking treatment of Black people by the medical establishment. “This was a story that was very important to me, as a young person in science,” says Sasha Henriques, director of equity assurance at Genomics England. “These types of stories are very important because a lot of the ways that Black bodies… have been used in science aren’t spoken about or acknowledged.” This book blew me away, too, for the way it brought Lacks to life and celebrated the immense importance of immortal cell lines – something I took for granted when I worked in a lab. Yet I couldn’t shake off an uneasy feeling when I reread it – and not just due to the terrible details of Lacks’s death and the fate of her oldest daughter Elsie, who died in a “hospital for the negro insane” aged 15. The narrative of The Immortal Life rests on Skloot’s relationship with Lacks’s youngest daughter, Deborah, who was just 2 when her mother died. Deborah is often portrayed as being in an unstable emotional state, desperate to find out about the mother she knew little about and uncertain who to trust. Yet she recognised that the story Skloot was uncovering would contain dark details, telling the writer that “you gotta tell all the Lacks story and there’ll be good and bad in that”. The upshot is that The Immortal Life contains graphic details about the lives of the Lacks children, including abuse and neglect, even after their privacy had already been grossly violated by the publication of their mother’s medical records and genome sequence by the medical establishment. It seems to me that Lacks’s sons – suspicious that Skloot was just another white person interfering with, and benefitting from, their family – paid a heavy price. Yet again, they had little control of the narrative. My unease about this bothered me so much that I decided to try to talk to the people who really matter: Lacks’s relatives. Lawrence (Lacks’s oldest son, and the longest surviving of her children) was particularly aggrieved by The Immortal Life (and the subsequent film that came out in 2017 starring Oprah Winfrey), but he died in 2023. So, I spoke with his granddaughter Robinson, a patients’ rights advocate, over Zoom from Baltimore, Maryland – where Lacks had also lived – to ask for her view of this book that contains such painful and personal details about her family. “When your family trauma becomes part of the public narrative, there’s naturally a complex of emotions involved,” says Robinson. “But if no family member can agree on anything that was written in the book, they can agree on this: that it brought Henrietta Lacks’s story to millions of people around the world, and it ensured that her name would no longer remain hidden behind scientific terms like HeLa. The book did what it was supposed to do.” But her legacy is more than science, says Robinson. “It’s about humanity, dignity and the importance that every person is respected. Behind every specimen is a person with a life, a legacy, a family and a story. Henrietta reminds us that greatness can come from the places society often overlooked. She changed the world without even knowing it.” This is why, notwithstanding my misgivings, I squarely believe that The Immortal Life is one of the greatest – and certainly one of the most important – popular science books of all time. It will make you cry, it will make you angry and it will make you profoundly grateful when you’re signing that consent form at the doctors, even though it might seem an annoyance at the time. As an addendum, I asked Robinson if she thought that her great-grandmother would have given permission for her cells to have been used. “I believe she would have,” says Robinson. “Everything we know about Henrietta tells us that she was caring, compassionate and loving. I believe that if someone had explained to her that the cells could have saved lives around the world, she would likely have said, ‘Yes’. But she wasn’t given the opportunity to make the decision for herself.” “Sometimes bad things happen to good people, so that great things can happen for the rest of the world,” she adds. [Image text:] L TA NELS CE REBECCA H IMMORTAL LIFE OF HENRIETTA LACKS CL With an introduction by Sarah Moss ASS c