Oh my Henrietta!

I finished reading "The Immortal Life of Henrietta Lacks", and can't stop thinking about it. It is the story of a young black woman -Henrietta Lacks, age 31- who contracted cervical cancer in 1951. She unfortunately was misdiagnosed and treated in the wrong manner, which led to her death. She would have died anyway, just perhaps not as quickly had she been treated appropriately. The focus of the story is about her cancer cells, and how they continued to grow in culture. Up until her cells were cultured, science had been unable to maintain cell growth- all the other cells died within a few days. Henrietta's cells, however, continued to grow. To the tune of enough to go around the world several times if they were layed side by side. Scientists have been able to come up with many medications and treatments for disease processes using these cells and their propensity for robust growth.

So why do I care? Here's the thing. Henrietta's cells were grown in culture without her consent- which was a common practice then and is today. Almost everyone has some form of their tissues on file somewhere in the world. When it was discovered by her family after her death, they were enraged, but not for the reason you might think. It seems that along with a lack of education, they were not recompensed for the use of Henrietta's (aka HeLa) cells. The family was without health insurance, and extremely poor. They felt that they should have received monetary compensation for the use of HeLa cells, and especially free medical care. Increasing the frustration was the fact that some family members thought Henrietta was still alive in some kind of limbo at Johns Hopkins Hospital in Baltimore, or that she had been taken off the street and used in macabre experiments. They didn't understand the concept of cell growth, mainly because of poor education, and not having the issue clearly explained to them.

As I read the book, I was alternately horrified, disgusted, amused, and uncertain. Not only is the book about Henrietta, it is also about ethical issues. Does science have to pay for the use of someone's tissues/samples/cells in order to study them? This would have a huge impact on the cost of medical research. On the other hand, others (read industry) makes a killing off of the proceeds from the sale of medication and equipment made from the use of said samples. Do extended family have claims on those proceeds? If so, why? They didn't do anything, didn't contribute anything to the research.

Another side of the issue I am grappling with, is the racial one. I don't think I am a racist. I don't care what color someone's skin is. Would I feel the same distaste for the behavior of Henrietta's family if they were white? or hispanic? or asian? Am I disgusted by the "the world owes me a living" mentality, or is it something else? I would like to think I would feel the same way. Coming from the background I do, raised with the "work hard and make something out of yourself" mantra, I violently oppose free rides. Everyone in this world should be contributing something to society, not taking. Granted, there are some who are disabled who need financial assistance, or medical care, that they are unable to provide for themselves. Those circumstances aside, how does one rationalize the right to receive something for nothing? I just can't wrap my brain around that.

Rebecca Skloot does a good job protraying the members of Henrietta's clan, their voices really came to life for me. The format she used was choppy though. In between telling the story, she took several detours to discuss the science behind the cells. While interesting, I found this distracting, and would have preferred the science and story to be in different sections. Would I recommend the book? Yes, with the caveat that you need to be willing to look at all sides of the issues, and wade through some disjointed writing. But I will say this- the next time something new comes out in the medical field, I will wonder- "who's cells were used in this technology?"