The Immortal Life of Henrietta Lacks is the story of Henrietta and her cancer cells.. Or is it. The story of Henrietta takes up but a chapter and even then there isn’t much to tell. Of her cancer cells, there is the makings of a book on cancer research, but this isn’t it. The book Rebecca Skloot wrote is about Deborah Lacks: Henrietta’s daughter. Deborah and her siblings were left motherless in 1951. The kids were abused by family members, uneducated, ill-informed, and predisposed to genetic illness of the body, mind, and soul. There is no happy ending, just more pain and misery for Deborah as she helps Miss Rebecca research the story of Henrietta and Elsie Lacks (A sister Deborah never knew she had.)
This book would make a good casebook for a class in Ethics and Sociology. The book shows how the role of stakeholders in the medical field evolves over time as possibilities develop. The book tried to develop the story of John Hopkins Hospital and other researchers as bad guys, but the hospital treated Henrietta better than I thought considering the year, her race, and financial background. [see quote below] I found some research questionable ethically, but the worst wasn’t done to Henrietta or her family. Much of the worst human research was done in a legal void that was soon corrected.
The book is a good read and gave me much to think about. The same was true for Rebecca Skloot- the Acknowledgements are long and quite detailed.
Amazon Book Preview of The Immortal Life of Henrietta Lacks
It is interesting to see how the California courts oscillated in extreme positions regarding ownership and rights to a patient’s tissue.
1988 California Court of Appeals, “[the] right of individuals to determine what is done to their own bodies.. A patient must have the ultimate power to control what become of his or her tissues. To hold otherwise would open the door to a massive invasion of human privacy and dignity in the name of medical progress.”
California Supreme Court, overturning this decision, “When tissues are removed from your body, with or without your consent, any claim you might have had to owning them vanishes. When you leave tissues in a doctor’s office or a lab, you abandon them as waste, and anyone can take your garbage and sell it.” They had been ‘transformed’ into an invention and were now the product of .. human ingenuity and inventive effort.
– page 205
The role John Hopkins Hospital played or didn’t play in the HeLa cell line.
Please let me emphasize that Hopkins never used the HeLa cells in a commercial venture. Hopkins never sought, nor realized, any money from the development, distribution or use of the HeLa cell cultures. In keeping with almost universally accepted practice at the time, physicians and other scientists at Hopkins and elsewhere did not seek permission to use tissue removed as part of diagnostic and treatment procedures. Also, in keeping with traditions of academic research at the time, the cultures were shared freely, without compensation and in good faith with scientists around the world who requested them. Indeed, willingness of Hopkins scientists to provide access to the cultures is perhaps the principal reason for the great benefits that have derived from their use.
As I’m sure we both know, many standards of practice in academic medicine have changed dramatically in recent years, and I hope and trust that there is increased sensitivity to, and awareness of, the wishes and interests of patients when they seek medical care or participate in research. That is all to the good, for academic medicine and those we serve.
Ross Jones, assistant to the President of Hopkins – page 225
It’s not what you think.
Ellen Wright Clayton, a physician and lawyer who is director of the Center for Biomedical Ethics and Society at Vanderbilt University, says there needs to be a “very public conversation” about all of this. She says, “If someone presented a bill in Congress that said, ‘As of today, when you go to the doctor for health care, your medical records and tissue samples can be used for research and nobody has to ask you’—if the issue were stated that bluntly so people could really understand what’s happening and say they’re okay with it, that would make me more comfortable with what we’re currently doing. Because what’s happening now is not what people think is going on.” –page 320