by Alysa Perry, program coordinator
When The Immortal Life of Henrietta Lacks was published in 2010, it became a New York Times Best Seller. Once you start reading, it’s easy to see why. Rebecca Skloot masterfully tells a story that is simultaneously entertaining, scientific, informative, and historical.
Skloot shares the biography of Henrietta Lacks, a poor black woman whose cells—taken without her consent when she was dying of cervical cancer in 1951—became one of the most transformative tools in medicine. Known as the HeLa cell line to medical professionals, Lacks’ cells have contributed to some of the most important advances in history: cloning, the polio vaccine, chemotherapy, in vitro fertilization, and more.
Lacks’ cells were unique because of their immortality. Until George Gey, a researcher at Johns Hopkins University, propagated the cells shortly after Lack’s death, no one had successfully kept cells alive for more than a few days—a major hindrance to medical research. Knowing how significant this discovery was, Gey went on to share the cells with his friends and fellow researchers, who then shared them with their colleagues. Today, HeLa cells are bought and sold by the billions, and are widely used around the world.
What is most impressive about Skloot’s telling of the story is her detective work. For decades the source of the HeLa cells remained a mystery. Even Lacks’ family and descendants were unaware of the cells’ existence until 25 years after her death. Skloot spent 10 years researching, reading, traveling, and winning the trust of the Lacks family in order to write the book. She poured over hundreds of resources and interviewed dozens of people who knew Lacks in order to accurately portray her.
Lacks’ story raises a number of complex ethical issues. The book traces not only the lives of the Lacks family, but also the history of informed consent—a concept that wasn’t salient until the latter half of the 20th century. When The Immortal Life of Henrietta Lacks was first published, Skloot was asked what lessons could be learned from her book. She responded, “the story of HeLa cells and what happened with Henrietta has often been held up as an example of a racist white scientist doing something malicious to a black woman. But that’s not accurate. The real story is much more subtle and complicated. What is very true about science is that there are human beings behind it and sometimes even with the best of intentions things go wrong.”
PRIM&R had the privilege of hosting Rebecca Skloot as a keynote speaker at the 2010 Advancing Ethical Research (AER) Conference in San Diego. Skloot shared stories about her writing and research process, and attendees described her talk as riveting and inspirational.
The Immortal Life of Henrietta Lacks is a must read for anyone new to the field of research ethics. It is extremely valuable as an introduction to many of the federal regulations and ethical considerations that are at the core of human subjects protections and it has become a classic text in the field. Most importantly, however, it gives Lacks the recognition and homage she deserves for her incredible contribution to modern medicine.