Henrietta

I just finished reading The Immortal Life of Henrietta Lacks by Rebecca Skloot. It was an excellent read and beautifully edited. (Before this I read in rapid succession all but two of Jasper Fforde's comedic novels, such as The Eyre Affair and The Fourth Bear, all of which contain at least one glaring typo for every five pages, so I felt this was noteworthy.) While heart-wrenching and painful to read (particularly when Skloot and Henrietta's daughter Deborah find Elsie's mildewing autopsy report) occasionally disgusting (watching Zakariyya eat over a pint of ice cream off a paper plate), and reminiscent of all of the time I spent in high school learning to hate myself for just how much white people have abused black people for centuries in the USA, I nevertheless had room in my brain left over to consider the more pragmatic issues surrounding Mrs. Lacks's cancerous tissue.

The big question that dominates the end of the book regards the ownership of components of the self once they have been voluntarily removed from the body. No one argues that if someone hacks off someone else's arm for the fun of it, they should put it back, or at the very least compensate their victim for the harm they've caused. But if a surgeon removes a damaged or damaging component of a willing patient, should the patient still have some claim to it? I'm referring to tumours, gangrenous appendages, iffy-looking moles, ruptured appendices--all things that A. people are better off without, and B. won't survive on their own once they're cut off.

If biopsies, blood samples, and other bits and pieces are useless to patients, and will more than likely rot or be discarded if given back after testing, then it makes sense that people who not only have a use for the samples, but know how to keep them useful should keep them. Figuring they're doing all the work to keep the cells alive, preserved, or indexed, and spending all the money on formaldehyde and electricity to run deep freezers, it's only fair that, given the opportunity, they should be allowed to earn the money back from any commercially viable discoveries they make using said samples.

But.

Patients did put in all the effort of growing those tumours from the outset. Whether or not the friendly doctor saved his life by removing it, and whether or not he wanted said tumour, the patient did do all of the primary work. Not only that, why shouldn't the patient be compensated for all the time he spent in pain, nauseated, bedridden, coughing up blood, and generally having a lousy time of it? We have this concept in our world that people should pay to get better, not be paid for being sick. But being sick is work--indeed, for some people it's the most difficult work they've ever undertaken. It may not always be work that supports a profitable enterprise, but if a patient is undergoing some course of treatment it has the potential to. The fact that some people volunteer to make theatre doesn't mean that practitioners shouldn't be paid if the show makes a profit. Surely if a researcher wishes to be paid for his medicine, he should compensate everyone who worked to achieve it.

Now, Henrietta may have waived her eligibility for compensation--not because of something she signed in life, but because her cancer cells went out of their way to sabotage years and billions of dollars' worth of research all around the world. I mean, I'm sure there's a breach of contract violation in that somewhere. If nothing else, it made a lot of people unhappy when they thought they'd made breakthroughs, only to realize that no, they'd just made another freezer-ful of Baltimore Black Lady. Maybe that's what happens when you harvest malignancies without informed consent. Henrietta let science make great advances and save millions of lives, but she got some pretty good jabs in for her trouble.

Anyway, a very well-written, touching, and pragmatic book that approaches the reader like you're an interested adult--at no point did I feel patronized, but the style likewise never dropped into unintelligible medical jargon. I'm very glad Skloot took the time to do it properly (the project took her ten years), and to communicate with Henrietta's family as people--to not only get their story, but to help them understand what happened to their mother, and how she changed the world. I'm grateful to Henrietta Lacks.

And Georgios Papanikolaou.