I urge you to stop what you’re doing and read Rebecca Skloot‘s The Immortal Life of Henrietta Lacks (Crown, 2010). It’s a rare combination: clear reporting on how medical science works, insightful consideration of deep moral issues about the uses of human tissue for the advancement of knowledge, and a moving, often troubling, family narrative.
Henrietta Lacks died of cervical cancer in the “colored” ward at Johns Hopkins Hospital, in 1951. From samples of her cervical tissue, the immortal cell line called HeLa was developed (by Dr. George Gey, at Hopkins). Skloot’s story covers the family’s travails before and since, but also digs deep into the problem of race in the business of American medicine. Her account challenges, or should move us to challenge, the smug certainties about our supposedly post-racial society, and the convenient formulae about “informed consent” and “access to care.” I guess I should say, The Immortal Life should make us ask just what “care” means in today’s system.
Henrietta Lacks and her family members were almost never taken seriously as humans with real problems. First, they were poor and uneducated black people from tobacco country relocated to Baltimore; then, they were the bearers of the same genes as a woman (Henrietta) who had died of a remarkably aggressive, and therefore medically interesting, cancer; later, they were background and local color to the story of the origin of the thriving, and therefore scientifically interesting, HeLa cell line.
To Skloot’s credit, she’s taken to heart, and acted on, the problem: she founded the Henrietta Lacks Foundation to help raise funds for education and medical expenses for Henrietta Lacks’s family. Skloot’s blog, Culture Dish, carries updates about some of the achievements of the foundation and sometimes takes up issues germane to the book, especially regarding personal rights to genetic information (here, for instance).
It’s also impressive that Skloot interweaves in her narrative (and takes up more fully and explicitly in an Afterword) the vexing question of ownership of tissue samples. She highlights how the expanding capacity to extract information from genetic sequencing ups the ante on the questions of privacy of tissue samples — since it’s now possible to ascertain potentially identifying information from genetic sequences even in a sample from which the usual verbal identifiers (name, address, and so forth) have been removed. And she asks how the profits potentially available from exploitation of new discoveries should be shared.
The intersection of these problems with the matter of race makes The Immortal Life of Henrietta Lacks, like James Jones’s Bad Blood and Harriet Washington’s Medical Apartheid, a book that should be required reading for everyone involved in the health sector today.