This is the 2nd non-fiction book I've read and enjoyed this month (the 1st being Devil in the White City). I have learned a ton. I was not familiar with any of the cell research described in this book and loved learning about the huge impact Hela has had on medical research. From polio and HPV vaccines to the development of the human genome project Hela has proven to be one of the most useful lab tools this century.
However, I was surprised on a few accounts by the perspective of this book. First, Skloot doesn't really have a scoop. As far as I can tell, she doesn't really uncover any new info. Certainly I have not seen the BBC documentary, but from how she describes it (and the family's reaction) she really hasn't done anything new with this book. Second (and related) the only semi-tangible scoop I can come up with is that she presents the family's perspective. This she does well; however she does not really present them in a positive light. She is very sympathetic and certainly her leanings and biases are in favor of Deborah and the family. It definitely comes across that Skloot is representing them accurately, but they are far from appealing. The family comes across as not only uneducated and poor (both features that were thrust upon them at birth), but uninterested (even poor people can be curious and search things out on the their own), useless (lots and lots of theives and addicts), disgusting (are any of them not disease-ridden and grossly overweight?), and generally not sympathetic in any way. Skloot's slant is definitely that the Lackses should have been treated better along the way and should get some sort of compensation. The sole exception seems to be Deborah who is not interested in monetary gain and does make several attempts to understand the science surrounding the Hela cell line and even considers going back to school.
I'm not convinced. I am glad to hear about the changes in informed consent and IRB policies (as a former grad student researcher I am very familiar with IRB procedures in a university setting) and the development of laws protecting patient's confidentiality. I completely agree that Henrietta should have been asked to donate her cells and that her medical records should have been kept confidential. However, given the descriptions of her as a person, I can only imagine that she would have agreed to allow them to study her cells. As for the rest of the family, I don't think that their consent was necessary. At this point in time, I think they spend a lot of time whining about how they have not been compensated instead of just moving on. After all, the scientists who have made the discoveries (unlike the Golde vs. Moore case in which Golde simply patented his patient's cells, which I think was wrong) spent their lives conducting their research.
While reading, I frequently wondered about how Skloot could justify the profits that her bestselling novel would make her when the Lacks family was so impoverished (especially given the slant of her novel and her open criticism of the profits made and kept from the Hela line) and so I was happy to see that she established the henriettalacksfoundation.org with some of the book's profits.
Overall, HeLa has become remarkably important to the medical field, but if they had not used Henrietta's cells to begin the line, someone else along the way would have provided cancerous cells that were also infected with HPV and became so easy to grow.
Another random thought as an aside: Skloot briefly touches on the life and institutionalization of Henrietta's eldest daughter, Elsie. The few things that Skloot and Deborah uncover about Elsie's life are very disturbing and allow the reader to surmise just how terribly she was treated. However, I was upset to see that Skloot just writes it off as another episode of racism. I've done other reading on mental institutions (especially from the 1950s) and there is lots of evidence that all mentally handicapped people were treated inhumanely, regardless of race.
Ultimately I gave the book 5 stars because it is very readable, informative, and provided great dinner conversation between my husband and kids and myself as we discussed the scientific discoveries and the ethical questions surrounding this topic.