Wednesday, July 28, 2010

Lacks standards

This is a picture of HeLa cells (source), which, cultured in their gajillions over sixty years, have been responsible for countless scientific breakthroughs (starting with the polio vaccine) and many of the techniques used in biological research today. Wired mapped it out thus:
The scale of the phenomenon is mind-boggling. The original sample taken in 1951 was about the size of a dime, but if one could bring together all the cells which have since been grown from it, they'd weigh more than a hundred Empire State Buildings. Hundreds of cures and billions of dollars in pharmaceutical products have been made possible.

HeLa cells are the subject of a fascinating new book by Rebecca Skloot, the fruit of a decade's research into the source of HeLa - a woman named Henrietta Lacks, who died of cervical cancer in 1951 at thirty-one. Turns out she did not give permission for the sample from her tumor to be taken, and, until recently, her descendants didn't know, and have never benefited in any way from what her cells effected. Until recently, few researchers thought about the HeLa cells' having a source, let alone who it was.

Skloot tracks down Lacks' family, who challenged everything [she] thought she knew about faith, science, journalism, and race (7). For Henrietta Lacks, whose cells were able to reproduce like no others (others soon die, but HeLa is "immortal"), was African American, child of a poor tobacco-farming family of ex-slaves in rural Virginia. The story is full of pathos, and bitter ironies. The central one: She's the most important person in the world and her family living in poverty, one relation says. If our mother so important to science, why can't we get health insurance? (168)

Skloot uses the story of her attempt to learn who Lacks was as a way to introduce readers to issues in bioethics - are our cells our own, what is informed consent (a term first used in 1957), who's entitled to make money off tissues, etc. - and to the horrifying history of African Americans' experience with medicine in the US. Long excluded from coverage in segregated and underfunded facilities on the one hand, they were on the other hand used - without notification - for medical research, of which the Tuskegee story is only the best-known case. One of Lacks' daughters, an epileptic, ends up at a "Hospital for the Negro Insane" called Crownsville, where

scientists often conducted research on patients ... without their consent, including one study entitled "Pneumoencephalographic and skull X-ray studies in 100 epileptics." Pneumoencephalography was a technique developed in 1919 for taking images of the brain, which floats in a sea of fluid. The fluid protects the brain from damage, but makes it very difficult to X-ray, since images taken through fluid are cloudy. Pneumoencephalography involved drilling holes into the skulls of research subjects, draining the fluid surrounding their brains, and pumping air or helium into the skull in place of the fluid to allow crisp X-rays. The side effects - crippling headaches, dizziness, seizures, vomiting - lasted until the body naturally refilled the skull with spinal fluid, which usually took two or three months. (275-6)

The practice was discontinued only in the 1970s. How could...? I can't find words.

The Lacks' family story is full of tragedy and horror, but we are given to understand it isn't exceptional. Exceptional is only that Henrietta's cancer (the cells from her body which weren't cancerous lasted no longer than other people's) made HeLa possible, and through it incredible scientific progress. So what do we do with that? Part of what makes the book so gripping is that it seems there should be something we can do with it, but there isn't. The Lacks' suffering - the suffering of inherited poverty, institutionalized racism and the consequent dysfunctions of health and family - isn't redeemed by her death and its immortal product.

In the place of resolution one is left with a number of opaque, surd facts. Henrietta's full but difficult life, cut short by illness. The unprecedented and category-defying spread of "her" cells. (Someone suggested that, as the cells multiply and change, HeLa is no longer human but a new species, 216.) The fact that it was not her healthy but her cancerous cells which achieved "immortality." All of our indebtedness to the research the HeLa cells have made possible. (Not to mention our indebtedness to research results wrung from the suffering of vulnerable people to this day.) The irrelevance of all this to the life chances of her family, poor blacks in America...

It's profoundly unsettling, as I suppose all of medicine (and all of ethics) ultimately should be: individual fates and destinies are unassimilable to the "larger" issues, methods and breakthroughs. From the question "is HeLa a form of human life?" we are brought to broader as well as more practical questions of what a human life is, and what conduces to - or hinders - its fragile flourishing.

Rebecca Skloot, The Immortal Life of Henrietta Lacks (NY: Crown, 2010)

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