The Immortal Life of Henrietta Lacks, by Rebecca Skloot, has already won awards and accolades as an exceptional piece of science writing/reporting as well as one of outstanding story-telling. As a biologist myself, I had put it on my “must-read” list because of its value as a reference into the history of life science. What I wasn’t expecting was what an intimate look into HISTORY it would be.
Some would call it a quirk of fate. Others would say it was merely an unusual set of circumstances that brought a woman named Henrietta Lacks, suffering from an advanced stage of cervical cancer, into Johns Hopkins Hospital at a time when researchers were scrambling madly to find a way to harvest a line of living human cells that would survive for more than a few days outside the body. And at a time when one of the most determined of those researchers was working in that very hospital. Dr. George Gey (pronounced “guy”) had been experimenting for years to find the best conditions for growing malignant cells outside the body, in order to study cancer. Most of his home-designed equipment was make-shift. His growth medium recipe was a work in progress. His wife, Margret, worked in the lab with him and designed protocols for handling tissue samples to reduce the possibility of contamination by outside sources. Still, they had not achieved success. If more time had gone by, Gey might have finally given up his decades long effort before having the chance to culture cells from Henrietta’s tumor.
That her cancer cells were even more distinctive than most was only discovered years later, when they were found to be contaminated with a type of virus that made them especially robust. Whether the virus was present when the cells were harvested may never be determined, but it means that the cells living today are far from identical to the first ones that reproduced themselves in George Gey’s lab. All of them bear the name “HELA,” though — the first two letters of her first and last names — the sample designation assigned to the first ones collected by Henrietta’s doctor and placed in the incubator by Gey’s research assistant, Mary Kubicek. .
But that’s all about the science. The human story is at least as compelling, and to some readers, may be even more so. Henrietta Lacks, her husband and children, were poor, under-educated people of mixed slave and slave-owner ancestry. Henrietta was remembered by her friends and family members as a cheerful, warm and loving woman who liked to go dancing when she had the chance. The difficulties of her life didn’t seem to weigh heavily on her until it became apparent that the cancer treatments she received were only adding to her illness and misery. Skloot’s depiction of these intimate details is heart-wrenching. She leaves nothing out.
Skloot also spares no detail in describing the culture in which all of this happened. It was the early 1950′s, a time when segregation was still the norm, and there were separate “colored-only” wards in the hospitals. That is not to say that the level of care was any less, although it may have been true in as many places as not, but the implication that sick, non-white people were viewed by some as human lab animals was there. Skloot describes the Tuskeegee syphilis study, in which thousands of African-American men infected with syphilis were enrolled in a research project to study how the disease killed, from infection to death. She doesn’t need to add that there was no excuse for such treatment at that time any more than now. The only redeeming virtue is that it was well in the past, and there are laws in place to prevent it from happening again.
I believe that most, if not all, of the researchers portrayed in Skloot’s book were motivated by a quest for knowledge and the desire to improve the lives of others, and that their insensitivity to the very human beings they acquired their research material from was an unfortunate by-product of the times they lived in. I’m not saying forgivable. They had no idea how little the Lacks family understood of what they were being told about the importance of Henrietta’s cells, what those cells were being used for, or even what the cells were, and the researchers didn’t seem to care about or to notice that fundamental lack of understanding.
One thing the Lacks family understood quite well was that a great deal of money had been made by others as a result of uses that had been found for those cells, and they had not seen a dime of it. And they were pissed off. I can’t imagine anyone not feeling a lot of righteous anger in their place. Henrietta’s daughter, Deborah, became physically ill from the stress of dealing with the emotional backwash.
Skloot expands on the topic of how human tissues collected by hospitals during a course of treatment or diagnosis is later used. It is a topic destined to be joined at the hip with conflict for a long time to come. The conflict comes from the question of just who “owns” those tissues, who has a right to use them, and who has a right to profit from that use. Skloot uses a number of examples where researchers have used cells and tissues, with or without the donor’s knowledge or consent, and made handsome profits off those tissues, with or without the donor receiving a portion. Those examples all had different outcomes, and brought up the possibility for growth of a whole new legal industry. A lot of it won’t be pretty, I think.
I am very thankful for this book, for the incredibly thorough job Skloot did in researching it, and the graceful, respectful job she did in telling it.She has recently compounded its value by forming the Henrietta Lacks Foundation, a public charity set up to help Henrietta’s descendants afford health care, college tuition, and other services they might not otherwise have access to, as well as help other needy families “who have made important contributions to scientific research without personally benefiting from those contributions, particularly those used in research without their knowledge or consent.” I heartily applaud her efforts.