The Immortal Life of Henrietta Lacks is about science, but it is not so much about the science. We learn that Mrs. Lacks’ cells contributed to many significant advances, but the book provides little detail as to how. Skloot focuses instead on the Lacks family and the small set of scientists and doctors surrounding her case. She traces Mrs. Lacks’ brief trajectory in life, from Clover, Virginia to Turner Station, Maryland, and then the sad history of her children, who endured poverty and various kinds of abuse. Neither they, nor Henrietta’s husband Day, knew of the cells or their importance until the ’70s, even though scientists took blood from them in an effort to stem HeLa’s invasion of other cell lines.
Skloot also provides some context on the use of human tissue by scientists, a practice which in Lacks’ day did not even require consent, much less “informed” consent. Although the researchers who initially coaxed HeLa to grow in culture gave the cells away for free, the mass production of HeLa has grown into a major industry. The cells themselves, and specialized products derived from them, are routinely sold as reagents at high prices, with no benefit to Henrietta’s descendants.
Skloot describes some similar cases for context, including the case of the Mo cell line, in which a man was subjected to procedures that had little purpose beyond improving a cell line from which he received no benefit, then denied a stake in the resulting commerce by the Supreme Court of California. As our capacity to reap massive quantities of data from tiny amounts of biological material increases, the question of who owns tissue samples and whether patients are due compensation if those samples prove scientifically useful will become ever more relevant. Striking a balance between the rights of the patient and the need for vital research is a question that should be confronted, but the history Skloot recounts suggests that governments would rather ignore the problem than reach a probably unpopular conclusion.
Regardless of the direction bioethics laws take, the genie has firmly escaped the bottle in HeLa’s case. It’s unlikely that the Lacks family will ever directly benefit from the industry that has grown up around the last remains of their matriarch. Maybe that’s a crime, and maybe it’s just bad luck. Either way, if you are one of the many who has benefited from Mrs. Lacks’ involuntary contribution to medical science, you may wish to give back via the Henrietta Lacks Foundation set up by Skloot to provide scholarships and health care for the Lacks family.