HeLa's legacy: care for human subjects
By now the name of Henrietta Lacks, unknown and unsung for decades, is practically a household word. And deservedly so. Although scientists used cells known as HeLa in groundbreaking work that led to the development of polio vaccine and leukemia treatments, among other discoveries, most knew little about the woman who unwittingly bequeathed them. All that changed earlier this year with Rebecca Skloot’s haunting book, The Immortal Life of Henrietta Lacks.
It seems fitting that on July 1, NPR named the The Immortal Life of Henrietta Lacks as one of the “best of the bestsellers.” Oprah Winfrey and Alan Ball, creator of HBO’s “True Blood,” are teaming up to create an HBO movie version of the book, and Skloot has just posted a series of FAQs about the book on her website. Skloot, daughter of renowned science writer Floyd Skloot, has also created the Henrietta Lacks Foundation (anyone can donate; Skloot is kicking in a portion of the book’s proceeds.) The Lacks family also has a website, which includes a picture of Lacks in life, and of her cells in the forever-after.
In her preface, Skloot nails the complex themes of the book: nothing less than faith, science, journalism, medical ethics, and race. She weaves together three narrative strands. She tells the life story of Lacks, who lived in hardscrabble Virginia tobacco country and died in 1951 from aggressive cervical cancer, leaving a husband and five children. But she also tells the story of the scientists and doctors who treated Lacks and cultivated her cells in the laboratory, using rough-hewn do-it-yourself methods to invent a way to keep the first “immortal” human cells alive for shipment to researchers all over the world. The third stream in the story involves Lacks’s children, their sense of loss, and their relationship with Skloot.
Although this may sound a tad Southern gothic (and Skloot cites the novel Fried Green Tomatoes as a narrative model), it adds up to a powerful, troubling story that cracks open the dry world of scientific ethics by plumbing the most essential moral questions. Those questions – about the rights of patients to control who has access to their tissue and to their medical data – are crucial as genomic research expands the bounds of knowledge. Congressional testimony, which Skloot details, exposed some of the horrific ethical breaches of the 1950s and 1960s. In 1974, the National Research Act was signed into law, and five years later a special commission issued the Belmont Report, which sets down guidelines that are in force today.