Skloot: The Immortal Life of Henrietta Lacks (2)

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Rebecca Skloot, The Immortal Life of Henrietta Lacks. New York : Crown Publishers, 2010. x + 369 pages; 8 pages of plates; illustrated; includes bibliographical references and index.

Tissue and cell donation are essential for the advancement of scientific research. Without these, researchers would not have been able to develop vaccines that save children's lives, test for genetic diseases to better prepare for and understand challenges facing those afflicted with things like Downs Syndrom, understand diabetes to help millions of people easily control their blood sugar, or develop in-vitro fertilization so loving couples can have the children they want. However, when these tissues and cells are taken without patient knowledge or consent, and then those tissues and cells go on to make someone millions (sometimes billions) of dollars, who has rights to them?

That is the story of Henrietta Lacks, the donor of the first cells (named "HeLa") that were successfully cultured, the donor of cells that became "immortal" because they continue to thrive today in thousands of labs around the world. These cells have been involved in the most important discoveries involving medical science since 1951 and many doctors and researchers hail her as a hero. But, her cells were taken without her knowledge when she was a poor, black, female patient at John Hopkins Hospital being treated for an aggressive form of cervical cancer. Her family was not aware of it either until 25 years after her death, her family who received no compensation for the HeLa cells, and generations after Henrietta have continued to live on extremely small incomes with no health insurance.

There is a very important ethical and scientific debate going on as to the ownership and rights to donor cells and what level of consent (if any) should be given by the donor. There are important points to both sides of the story and is definitely an issue that will not be resolved before many court cases are tried and many mutually respectful discussions are had. Who knows what the future holds but I thought one of the best quotes of the book came from Deborah Lacks (Henrietta's daughter), when repeatedly asked if she was angry about what happened to her mother and mad at the doctors and researchers responsible, she replied, "...if you gonna go into history, you can't do it with a hate attitude. You got to remember, times was different."

Deborah Lacks often said that she was glad that her mother's cells had gone on to help so many people; Deborah just wanted to be aware of what was going on with them. She felt that by knowing more about the cells, she was closer to a mother that she didn't remember. I think that was one of the most heartbreaking aspects of the story: the Lackses in this story are not highly educated people, they did not know what cells even were let alone were able to comprehend what it meant to still have the cells alive and to run extensive research on them. Their anger and fear often stemmed from a lack of understanding, and no doctors took the time to explain--in understandable language--what was going on. For me, the most touching part of the story was when a young doctor finally took the time to explain the science as well as took the time to listen to the family.

I thought this book was a great story with regards to the life and family of Henrietta Lacks. Sometimes her descendants aggravated me because of the outlandish things they believed about the cells and their extreme paranoia, but I kept asking myself how I would respond if I didn't have a science background and had lived a life more similar to the Lacks children--probably just like they did. As a scientist, I really wanted more info on the cells themselves and some of the research that had been conducted on them, and more about some of the moral and ethical debates that are currently being argued.

Overall, an interesting book that reminded me (again) that science can be scary for people who don't understand, and reinforced the value of being able and taking the time to effectively communicate with non-scientists about issues that pertain to them. Not only the time, but also the compassion to care.

-- Notes by NR