However, the family knew nothing about this until the early 1970s, and then only by accident (through a chance conversation between Henrietta's daughter-in-law Bobbette and the brother-in-law of a friend of hers. The cells had been removed without Henrietta's knowledge or consent (which, by the way, is not illegal even now) when she was alive. The only consent given was for a partial autopsy and cell removal after Henrietta's death. The family was never told of the research done. Today, the family has more say-so in research and will receive name credit in scientific papers (something that occurred this summer, after the book was out.) In the book, most of the family expressed that they were not really after monetary gain and were happy that Henrietta's tragic death at least served the purpose of furthering science. The family just wanted to be sure that Henrietta was remembered. The irony that HeLa has generated billions of dollars in medicines and research, while the poverty-stricken Lacks family can barely afford even the most basic medical care, is pointed out.
Some might find the use of the cells without the family's consent a disturbing lack of communication. Indeed, the immediate access to the family's genetic code is problematic (this was rectified for the Lacks family somewhat in 2013). There has been at least one case-mentioned in the book- where someone was denied insurance when her genetic information was leaked. There are a lot of sticky issues- where do you draw the line between a family's privacy and progress, especially advances that can impact billions of people?
More disturbing was when the hospital called in the family to order blood samples taken. Scientists and medical professionals were wrestling with cell contamination- HeLa was spreading into other cell cultures, jeopardizing millions of dollars of research. However, the family had no idea what was going on; Henrietta's daughter Deborah thought she was being screened for cancer. I don't think this was a deliberate effort to keep the family in the dark, but more of a case of professional tunnel vision: we need results, and the answer is at hand, so let's just act. The lack of communication is appalling, especially by today's standards.
The book is a nice balance of information on the family (including a lot of interviews), of the science (without getting too technical), history and the ethical issues. This is a great read for those who enjoy a good ethics debate.
Currently reading: The Crimson Crown, by Cinda Williams Chima