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the immortal life of henrietta lacks

7 march 2011

I don't want to write too much about The Immortal Life of Henrietta Lacks, my university's "OneBook" for 2011-12. It's a fluently-written, heartfelt, impressively researched book. After reading it, I feel sympathy for the travails of Henrietta Lacks and her family. I found the medical-history chapters and the intellectual-property passages in the book to be intriguing. So why do I have an overall uncomfortable feeling about the book, and a reluctance to be drawn into a discussion of it?

Henrietta Lacks died in 1951 of a cancer so aggressive that cells taken from her tumor still live on in laboratory cultures around the world. Those cells form the basic raw material of modern research on human medicine and genetics. Meanwhile, Lacks's widower, children, and grandchildren didn't get any of the money made from her body. Skloot tells the two stories in twined strands, alternating medical triumph with private tragedy.

The "medical triumph" part of the story was actually well-known when Skloot began writing, and its many ironies were public knowledge. Essays about Henrietta Lacks have long been salient in periodicals, collections, and anthologies. What's new in The Immortal Life of Henrietta Lacks is the family counterpoint. (New too is the widely-publicized meta-story of the problems that Immortal Life had finding a publisher, which have become inextricable from Skloot's crusade for justice for the Lacks family.)

It's an awful story of injustice and ingratitude. But it also makes for uneasy reading. Skloot gained the confidence of many members of the Lacks family, and tells their searing story in great detail. I feel like a voyeur reading it. A self-satisfied, politically correct voyeur on the right-thinking side of history, for sure, but a voyeur nonetheless.

In reviewing the book for The Root, Amy Alexander talked of "a perversity of Grand Guignol proportions" in the injustices done the Lacks family. There's that, and there's also media theatre of Jerry-Springerish proportions. Skloot thrusts the Lacks family, unedited, into print. We see their dignity; we see their ignorance; we see their pain; we see the chaos of their lives. Do we need to see this to understand the story of the "HeLa" cells? Do we need this story at all?

That's the problem of The Immortal Life of Henrietta Lacks for me: one of exigence. The book seems to be written so that the book could be written. It may do the family some good; it may ultimately do them more harm.

Well, harm is at the root of the story anyway. Such harm can be diluted by publicity, but probably not compounded. But there are ironies that Skloot remains blind to (awareness of them would have prevented her writing the book).

Early researchers who grew Lacks's cells outside her body combined various principles we wouldn't employ today. They labeled the cells with Lacks's real initials; they didn't give a hoot about "informed consent"; they were cavalier about publicizing her medical records; and they were coy, when they had the chance, about identifying her. These principles are at odds with one another. In 2011 complete privacy is the law of the land. In 1951, people kept your medical records secret only when it disingenuously benefited them.

But privacy and its attendant dignities are values that we intermittently believe in and selectively enforce. In a way, I sympathize with those early researchers who wanted to keep Henrietta Lacks a secret. Yes, some of them got rich on the secrecy. Others totally didn't: George Gey, most instrumental in establishing the HeLa culture line, was an open-source researcher who wanted beneficial results, not personal profit; he shared the cells to a fault.

Should the family have benefited? Absolutely. Should they have benefited behind a veil of privacy? Again, absolutely. It may take the rending of that veil to bring them much-delayed compensation in the form of bestseller fame. But it's as great a shame that they could not have kept their suffering ancestor offstage as it is that they were bilked of the profits of her suffering.

Well, that's a lot of words about a book I promised to write little about. But they're really just meta-words. Rebecca Skloot's book is a fine literary achievement, but I'd rather stay silent about it now. I don't like the idea of this family's troubles becoming fodder for research papers.

Skloot, Rebecca. The Immortal Life of Henrietta Lacks. New York: Random House, 2010.