Monday, June 20, 2016

The Immortal Life of Henrietta Lacks, by Rebecca Skloot

 This book was all the rage a few years ago, and I did not read it then because I have a hard time reading non-fiction. One of my bookclubs picked it for the end of this month, so I bought it back in April. I finally finished it. I do have trouble with non-fiction.

This is not, however, the book I expected. I thought it was going to be much more rigorously scientific. Instead, it highlights the messiness that constitutes concepts like "progress," "science," and "understanding."

In brief, a young black woman was admitted to Johns Hopkins hospital in Baltimore in 1951 with aggressive cervical cancer. So aggressive that she was sent home multiple times as "well" until she showed up and never left the hospital again. The autopsy showed that in a matter of weeks, the cancer had invaded her entire body.

At some point, a doctor took a sliver of the cervix--the book is not terribly clear about whether the sample was healthy or malignant (until the end, when Skloot clearly articulates that the sample was cancerous)--and used it as another attempt at his frustratingly unsuccessful quest to grow human cells in culture. These cells turned out to be vigorous and rapid growers, and a medical industry of tissue culture was launched.

Skloot has several points she is making here, and to her credit, she makes them clearly without beating the reader over the head with them. Instead, she leads us gently into the morass of medical ethics and challenges our assumptions about what "science" is.

Henrietta Lacks had the misfortune of having a terrible, aggressive, painful cancer that killed her at a time when the treatment for cancer were scarcely better than the disease. As a black woman in 1951 Baltimore, she was lucky to get any treatment at all--de facto segregation and poverty were enormous barriers to adequate care, even if the state of cancer treatment were any better than it was. Patients were not encouraged to question doctors generally, especially when black, poor, and female.

So Skloot sets out to do a number of things with this book. One is to recover who Henrietta Lacks was as a person--to reclaim the human being in her full humanity. This turns out to be very difficult, because the family has closed ranks and doesn't trust anyone, and even as Skloot gains their trust, not many people knew her. She had been dead for nearly 50 years when Skloot began asking about her, and many of the people were just too young to know anything about her.

She perseveres, and manages to sketch a woman whose life was severely circumscribed by poverty. Yet she was loved, she married, had five children, before dying at 31. Her death is particularly graphic and tragic.

Meanwhile, the "science" of cancer treatment and tissue research was far from rigorous. So the poverty of Henrietta Lack's life is weirdly mirrored by the doctor who first grew her cells. George Gey had theories, and ideas, and almost no funding and no support. He built his own lab equipment, often from salvaged junk, and basically invented cell growth medium from scratch. There is no reason to suspect that Henrietta Lacks's cells would do anything but die like all the rest of them.

These were the wild and wooly days of tissue research, when scientists traveled to labs carrying samples in their coat pockets and briefcases. These cells (labeled "HeLa") ended up being subjected to any number of strange manipulations as people attempted to figure out how to even test cells. Cells were sent into space, were subjected to nuclear testing, were treated with any number of possible toxins and vaccines, even as there was no system for keeping samples uncontaminated.

This lackadaisical approach to sterility is ridiculous to read about now, but is clearly part of the learning process of how to understand tissue research. It is how scientists learned--they made a lot of mistakes, but made an amazing number of discoveries using these new cells.

Meanwhile, Skloot interleaves these chapters with chapters about Henrietta Lacks's children and extended family. One daughter in particular, Deborah, keenly feels the loss of her mother and becomes emotionally volatile as she learns hthe fate of her mother. The Lackses remained poor and ill-educated after Henrietta's death, and it would be easy to mock their failure to understand what happened (and continues to happen) with Henrietta's cells.

Deborah in particular seems to feel that her mother exists inside those cells, and she asks people if they could use those cells to raise her mother from the dead, or to clones an exact replica. This might sound "crazy" but isn't that the same kind of question that scientists are asking in different contexts? What does it mean that these cells keep reproducing, a half century after Henrietta's death? Who owns that information? Does science owe Henrietta anything? Is there a financial obligation owed to her children--who are themselves so poor they can't usually afford health care?

In the end, the cells themselves seem to be immortal, is Henrietta also? Is it only fair that the woman herself be recognized? What does it mean to be immortal?

Perhaps the most meaty portion of the book is the Afterward, where Skloot lays out a number of ethical questions about tissue research. Matters of informed consent, monetization, genetic patents raise important questions that have not been definitively answered. Why shouldn't Henrietta's children get some payment for the use of her cells? An early court challenge to the use of human cells was decided against the donor, based on the concern that allowing donors to demand financial compensation might slow scientific research. The reality is that this decision simply moved the financial issues to the actual researchers. Genetic patents mean that science is held hostage by other scientists and biomedical companies--isn't this classist?

Fundamentally, it feels wrong that there should be so much money sloshing around the HeLa cells, and yet Henrietta Lacks's children and grandchildren should continue to be too poor to afford health care.

In the end, the book stands as an argument that not just the cells are "immortal" but the woman should be remembered as well, and should be immortal in her own right. TL:dr--the issues that underlie the book are clearly and cogently laid out in the Afterword, which might be the only really necessary reading. The issue is complicated, but is clearly articulated in it's complexity.

Skloot contrasts the questions scientists raise with the questions raised by Henrietta Lacks's family. They really are only different in detail--what does it MEAN to conduct experiments on human cells?

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