This is a fascinating, well written book. The author gives some compassionate, thoughtful insight into the world of medical research, and devotes equal time to the good and bad. The good is that medical research has saved lives by finding cures for and protection from disease. The downside is that tissue that has been removed isn’t considered the patient’s property, and the patient and their family too often receive no compensation for the benefits from research (i.e. drugs developed) while the industry makes a fortune. The situation has improved as far as getting consent. Patients do have to give consent before procedures, but tissue samples are still stored and the patient has no rights as far as compensation.
The Immortal Life of Henrietta Lacks focuses on research involving cells taken from a woman named Henrietta Lacks, who died from cancer at a young age. These cells, known as HeLa, are instrumental in assisting scientists in gene mapping, developing the medication used for cancer, diabetes, and a number of other diseases or problems, as well as the tests for HIV and hepatitis. Rebecca Sklott first heard about the HeLa cells as a teenager in a biology class, and intrigued by the fact she wasn’t able to find out anything about the person the cells had been taken from, decided to learn more when she was in her 20s. This led to ten years of interviews and research before her book was published.
There are two points of view here: That of Henrietta’s family and that of research, and Ms. Sklott presents both sides in a straightforward, unbiased way. The author is a science journalist, so the scientific information is sound, and kept simple enough for people without a background in science to understand. What I liked best about the book was the relationship that Ms. Sklott developed with Henrietta’s family, particularly her youngest daughter Deborah. The Lacks family is initially suspicious of the author and her motives, but they allow her to get their mother’s story out there. The end result is a journey of a family that lost their mother too soon (Henrietta died before Deborah and her youngest brother were old enough to have the chance to know her), had some very hard times and was exploited in many ways, but who ultimately are happy Henrietta helped people, and some good information on the role HeLa cells play in medical research.
Here is a link with some information about HeLa cells.
And a link to Rebecca Sklott’s web site.