Disturbing

The Immortal Life of Henrietta Lacks, by Rebecca Skloot. Having taught the case Moore v. UCLA for years when I taught Property, this book immediately caught my attention. I was outaged that UCLA would, without consent or knowledge, take Mr. Moore's cells and develop a cell line estimated to be worth billions of dollars. That Moore would have no legal recourse was even more disturbing.

And then there's Henrietta Lacks. An African-American woman, years before Moore, she suffered the same fate. Mrs. Lacks was the victim cervical cancer. Her cancer cells were the first that scientists were able to culture and grow in a lab. They were special; given the appropriate nutrients, they continue to divide forever. As a result of the HPV virus, her cervical cells mutated in such a way as to become truly immortal.

It is probably not hyperbole to suggest that every single person alive today has benefitted in some way from Mrs. Lack's cells. But not Henrietta. In fact, she suffered a horrific death from her cancer. Given that her cancer was diagnosed in the early 1950s at a time long before chemotherapy drugs existed in any substantial form or radiation was fully understood, cervical cancer was essentially a death sentence for many women. So, at the risk of sounding cold or callous, her death is sad, but no more tragic than the loss of others who died from cancer then or who die today despite the advances in cancer treatment.

What is particularly tragic is that her family, including her five children, never benefitted from the millions (billions?) of dollars that have been generated from selling her cells or from the products devloped using those cells. Mrs. Lacks' family is poor; her children don't even have health insurance that would allow them to obtain the drugs that have been developed using their mother's cells. In fact, her family wasn't aware that Mrs. Lacks cells existed until years after her death when researchers contacted them so that research might be conducted on them.

All of Mrs. Lacks' children have suffered to some degree or another, but Mrs. Lacks' younger daughter, Deborah, seems to have suffered almost as much as did her mother. Growing up without a mother and poorly educated; being treated wth condescension by those who didn't bother to explain things to her or being deliberately misled by those who aimed to take advantage of her, she was never sure whom to trust.
This book describes Deborah's trials as well as those of her siblings. Skloot recounts the science behind the HeLa cell line and the scientists who developed it. In the process, she raises a rash of legal and ethical questions. More importantly, she brings the memory of Henrietta Lacks to life. As one of the original scientists remarked early in the book, when she saw Mrs. Lacks' painted toenails as she finished the autopsy, she was reminded that indeed Henrietta Lacks was a real person, a woman who at one time lived an ordinary life. This book serves a reminder to those of us who didn't have to worry about contracting polio or who have the benefit of drugs that are safe and effective of the contribution Mrs. Lacks made to science. And perhaps opening up to Skloot so that this book could become a reality resulted in Deborah gaining some degree of peace before her death.


A book well worth reading.