The first thing to say about The Immortal Life of Henrietta Lacks by Rebecca Skloot is that it really is as good as the reviews say it is. I put it on my library list when I first heard about it, but when I got it last week, I wasn’t sure I was really up for diving into a story about science and race. But I was concerned if I didn’t start it right away, I wouldn’t finish it within the 3 weeks the library allows, and that I wouldn’t be able to renew it. So I started reading it Friday evening… and finished less than 24 hours later. I literally can’t think of the last nonfiction book that I read that way — it’s that good.
Henrietta Lacks developed cervical cancer in 1951, when she was just 30. She lived in Baltimore, and so went for treatment at Johns Hopkins, which had a ward for black patients. The doctors there removed her tumor and treated her with the best practice of the day — sewing radium packs into her cervix. But the cancer recurred and spread rapidly to pretty much every organ in her body, and Lacks died. But meanwhile, scientists at Hopkins had attempted to grow the cells from her tumor in culture — and discovered that unlike almost every other cells they had tried, these cells reproduced indefinitely. The cell line was dubbed HeLa, and was freely shared with labs around the world, and has been critical to the biological sciences ever since.
Skloot carefully lays out multiple entwined stories around Henrietta Lacks and HeLa — what is known of her short life, how her children were affected by her early death, and again how they were affected years later when they learned about HeLa, and how Skloot came to win their trust, but also about the doctors who treated Lacks, the scientists who reproduced and shared her cells, the ways they were used, the development of modern medical ethical standards around informed consent, the history of abuse of black patients in the name of science, the discovery that most of the cell lines used in research had been contaminated by HeLa cells, and present day controversies over patenting genes and whether donors have any financial claim on products made from their tissues. These multiple stories could easily have become too much, or totally confusing, but they don’t.
This story is fascinating in large part because the answers to the ethical questions are far from obvious. There are some people in the book who were clearly wronged by scientists. Henrietta’s oldest daughter had epilepsy, and was institutionalized, dying shortly after her mother. Skloot goes with Henrietta’s younger daughter to that institution, and finds that she was almost certainly mistreated and experimented upon in ways that were harmful to her. Scientists also injected HeLa cells into patients without informing them in order to see what would happen. But Henrietta was not harmed by the cloning of her cells, and anyone who has benefited from a drug that has been tested in the past 50 years has benefited from the HeLa line. The Lacks family has been very poor — and struggled to get health care at some times — and some people have gotten rich off of HeLa, but neither Hopkins nor the scientist who first reproduced the cells appears to be among them. (Skloot has set up a foundation to benefit Henrietta Lacks’ descendents and you can also give directly to the family through their website.) Medical ethics rules have gotten a lot stricter since 1951, but even today, it seems likely that something like this could well happen again — except that with more concern for patient privacy, it’s even less likely that the donor would ever know.
When N was born, I had the umbilical cord blood collected and donated to a public bank. This means that it’s not reserved for our use, but in theory will be available to us if we ever need it and there’s any left. (It’s not at clear to me that umbilical cord blood is actually useful, but it clearly has potential, so there didn’t seem to be any downside.) It occurs to me that I have no idea what the conditions of my donation were — whether it’s only available for direct use by a patient, or if a researcher could apply for a portion of it. I’d be happy to have it used in any way that would be helpful.