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I wasn't sure how much I would get from The Immortal Life of Henrietta Lacks, since I had already heard a fairly comprehensive retelling of the story on the RadioLab podcast.  I actually really enjoyed the book, as its depth really added to my understanding of the family's situation and the historical details.  I do recommend listening to the podcast as well as reading the book.  The interviews with Henrietta's daughter Deborah gave her character even more life, even though I thought Skloot's characterization of Deborah was very well fleshed-out.

I thought the format of the book was one of its best features.  The way Skloot unveiled the story by switching from decade to decade, while intermingling medical information with human interest, kept me so engaged that I read almost all of the book in one day.  I also thought that following the reporter through the research process to some extent was smart writing.  I felt Skloot's excitement or surprise or dismay every time she encountered some new information or the family acted unexpectedly.

I wrote in an earlier post that I thought the Lacks children would have reacted differently to the news about their mother's cells had they been better informed and educated by the scientists who broke the news.  I still think this is the case, as evidenced by Deborah's gradually increasing comfort with her mother's cells being used for science over the course of the book.  It was heartbreaking to read about Deborah's anxieties over scientific activities involving Henrietta's cells that Deborah perceived as being physically painful to her mother.  Deborah also should not have been made to worry about having cancer herself when her blood was drawn for genetic testing.  There was a glaring lack of communication about what was being done with the cells from the very beginning, which I think signifies a lack of respect.  This seems to pretty well align with appalling medical research practices that exploited African American populations until at least the 1960s, such as the Tuskegee syphilis studies.

But Skloot ends her book by telling us that regardless of race, class, or any other variable, you are not guaranteed informed consent concerning the use of your tissues.  It was shocking to learn that getting informed consent from tissue donors is not law.  If consent does happen, it's out of the goodness of the researcher's heart.  Financial matters related to tissue use complicate the issue even more.  I do not believe that it was ever George Gey's to make financial gains from HeLa, as his generosity with the early HeLa cells indicates.  This good-natured sharing of resources is what I've always (perhaps naively) thought science was about.  I don't know what I think should be done to compensate people whose tissues bring profits to researchers or medical supply companies.  I do know that it seemed incredibly unjust that Henrietta's cells were making people rich while her family struggled to survive.  Even more frustrating is the idea that researchers could be using Henrietta's cells for years and on such a broad scale without anyone in her family being aware.

No wonder scientists prefer to mentally separate the people from the cells and tissues they research.  Things get far too gray when ethics and obligation come into play.

In thinking about the book and libraries, I was reminded of our conversation about health information in last week's class.  Several times in Skloot's interviews with Lacks family members, an individual would stress that they would not question a doctor's authority, especially when the doctor was white and the patient was black.  It occurs to me that the library and internet, though their medical information may be questionable at times, have wrenched the monopoly on medical knowledge away from doctors and have put it in the hands of the patients.  Although I'm still not entirely sure how I feel about answering medical questions in the library setting, I do feel that simply maintaining a well-rounded health collection could be a way to provide control over health care to patrons and therefore enact social justice.