Lacks Family Reflects on HeLa Legacy and Skloot's Book
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- Henrietta Lacks died of cervical cancer in 1951 at age 31, and cells taken from her tumor without her knowledge became the first "immortal" human cell line (HeLa), now central to COVID-19 vaccines, cancer treatments, and IVF.
- For more than 20 years, Lacks's husband and children didn't know her cells were being kept alive in laboratories worldwide, while scientific institutions and companies profited from HeLa discoveries and the family often lacked access to healthcare.
- Rebecca Skloot spent over a decade researching Lacks's story and published "The Immortal Life of Henrietta Lacks" in 2010; the book became a bestseller and was adapted into a 2017 film starring Oprah Winfrey.
- Veronica Robinson, Lacks's great-granddaughter and a patients' rights advocate, says the family can agree on one thing: the book ensured Henrietta's name "would no longer remain hidden behind scientific terms like HeLa," despite the pain of having family trauma become public.
- Lawrence Lacks, Henrietta's oldest son and longest-surviving child, was particularly aggrieved by the book and film; he died in 2023 before author interviews could take place.
- Sasha Henriques, director of equity assurance at Genomics England, says stories like Lacks's matter because "a lot of the ways that Black bodies… have been used in science aren't spoken about or acknowledged."
- Robinson believes Henrietta Lacks would have consented to cell use if asked — "if someone had explained 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."
Why it matters: The Lacks family's perspective reframes the HeLa story from a scientific triumph into an unresolved bioethics reckoning — consent was never obtained, the family went over two decades without knowing, and companies profited from cells taken from a Black patient who was never informed. That history continues to shape how Black patients weigh the risks of participating in medical research today.
