Like Moon Dust, The Secret Life of Henrietta Lacks is a book where the author/narrator is a character. By the end of the book, you know Rebecca Skloot almost as well as you know Henrietta Lacks or her family. Most of the time this works really well – it is, after all a personal story. The only time I thought that it didn’t work as well was near the beginning, when Rebecca is detailing her erratic, apathetic education. I understand why her initial exposure to HeLa and Henrietta’s identity is important, but the rest of it seemed a bit unnecessary to me. I kept waiting for it to be significant, to be a point of commonality that Rebecca could use, but it never happened.
But that’s a minor quibble for a book that includes so much on so many topics. In addition to being a biography of Henrietta Lacks, it’s also the story of her family, Johns Hopkins, the medical researchers, and the cell line. It also touches on racism, social inequality, ethics, and education and class. I’m not going to say a lot about the various biographies that are incorporated into the book: they are, after all, the story. But I do want to touch briefly on the wider issues.
The racism issue is pretty simple: would Henrietta Lacks and her family have been treated differently if they were not black? The answer is, sadly, probably yes. I don’t think the outcome would have been different: Henrietta’s cells would still have been taken, etc., but I think the way they were taken and especially the way her family was treated would have been different. I wish I could be wrong about this; there is of course no way to know.
Tied in with that is the question of social class (which in the US is often tied to race as well as economics and education). I feel fairly certain that the Lacks family would not have been dismissed the way they were if they had been, or appeared, richer and/or more educated.
Which brings me to the next thing I noticed: the assumptions that come with education. It’s something that I am often very guilty of. When you’re surrounded by something when you’ve spent years learning about something, you forget that not everyone has. You assume that the basic ideas and vocabulary of your subject are common knowledge, and you forget that there was a time when you had to learn them too.
This is what happened with Henrietta Lacks’s family. Most of the researchers who contacted the Lacks family (for DNA samples, for example) or whom the family contacted for information assumed a base level of understanding that the family didn’t have. If that basic understanding of a field isn’t there, the rest is gibberish and there’s nowhere even to start asking questions. It wasn’t until someone took the time to make sure that the family understood the basics that they could move on and process what had happened.
The last thing – and the most controversial thing – that’s brought up by this story is the ethics of tissue collection. What sort of rights does or should a person have over cells that are no longer a part of their body? What sort of information should someone be entitled to if, like Henrietta, their cells prove to be useful or unusual? What responsibility do researchers have to follow up with patients or their families? There are no good or easy answers that can balance the rights of researchers with the rights of patients.
The Secret Life of Henrietta Lacks is an incredibly well-researched book. There are points where, to me Rebecca’s story seemed a bit intrusive, but overall the stories it tells and the issues it raises help it live up to every glowing review.