21 February, 2014

Book Review: The Immortal Life of Henrietta Lacks

From Goodreads: Henrietta Lacks, as HeLa, is known to present-day scientists for her cells from cervical cancer. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells were taken without her knowledge and still live decades after her death. Cells descended from her may weigh more than 50M metric tons.
HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks was buried in an unmarked grave.
The journey starts in the “colored” ward of Johns Hopkins Hospital in the 1950s, her small, dying hometown of Clover, Virginia — wooden slave quarters, faith healings, and voodoo. Today are stark white laboratories with freezers full of HeLa cells, East Baltimore children and grandchildren live in obscurity, see no profits, and feel violated. The dark history of experimentation on African Americans helped lead to the birth of bioethics, and legal battles over whether we control the stuff we are made of.

Thoughts:  Although you may not know it, you may owe your life to Henrietta Lacks - a poor African American woman who died in 1951. She also had cells taken from her cervix that turned out to be rather incredible and have been used in just about every medical research project since.
The big problem - Lacks never knew, and neither did her family.
The Immortal Life of Henrietta Lacks raises a raft of issues. Once tissue leaves your body, do you have any right or control over it? Should you? Should you be able to say whether or not it's used, whether is should be used for commercial purposes and if it is, should you be compensated for it?
I think very few people would not allow their tissues to be used to further medical research. What is wrong (as far as I'm concerned) is when money is made of the raw product without the knowledge or consent of the donor or their family. (ie. the cells) There are whole companies in America who have built substantial businesses based on HeLa cells and her family can't even get medical insurance.
The thing that struck me the most though, is for Henrietta's daughter, Deborah, it wasn't about money - it was about appropriate recognition for her mother. In the end, even her brothers who were all ready to sue Hopkins came to that conclusion. And really, I'm not surprised. I think very few people would see it as a money making opportunity. In fact, research cited in the book suggests it is those without an emotional attachment to the tissues (as the donor or a family member) who are more likely to want to commercialise it. 
The Immortal Life of Henrietta Lacks is a fantastic read and worthy of all the praise it has been given, Highly recommended.

Challenges: 5 from Forever in '14