Nonfiction, 337pp.
Presenting numerous ethical topics about ownership of one's own tissues and cells, Skloot tells a compelling and personal story of the Lacks family and their relationship to the famous HeLa cells. Henrietta Lacks was the "donor" of a sample of cancerous cells that have gone on to live for over 60 years and have multiplied by the billions and have been the foundations for the fields of virology, genetics and countless other medical discoveries of the 20th and 21st century. It is truly miraculous how a sample taken from one patient could have had and still has such a tremendous impact on science and medicine and been so beneficial to mankind.
Henrietta Lacks was unknown as a person through most of this time her cells were being studied, except in the small memories of her remaining family. She also left behind children who have a painful story to tell. Their loss is deeply felt as they discover who their lost mother was and as they discover the truth about her still living cells. The family holds to deep beliefs that Henrietta's spirit lives on in those cells and that because of the person she is certain things have happened pertaining to the examination of them.
This book follows closely the path science has traveled in its years of taking from patients for the good of science (and the ill of patients) and also for the purposes of capitalism. Skloot has made this book one of thorough research with accurate telling of the scientific story but also of a personal journey she took with the family in making her discoveries. It becomes engrossing because of the humanistic aspect but also because of the amazing science and ethical questions it raises.
Questions (I wrote) for our Book Group Discussion: (contains spoilers)
1. Learning about what the HeLa cells have done for society is exciting and amazing. Does it make any difference to you knowing who the person was who donated those cells and what sort of person she was? (Endearing, perhaps, but does it matter?) Does it affect your perspective of the nature of the cells knowing she was a "good" person and would it change if you found out she wasn't; if she was a criminal, for example?
2. When Mary saw the toenail polish on Henrietta's corpse, she realized for the first time that the cells she had been working on had come from a "real" person. Do you think that lab scientists are lacking in a proper view of the specimens they are working on? Should they view the tissues and cells in a more personal manner or is it for the benefit of their study that there is a separation or distinction.
3. In Chapter 17 the issue of informed consent is examined. Obviously in history people have been experimented on, with or without their knowledge, for the so-called benefit of science and mankind. In this specific case of cancer research, would you compare it to what the Nazi doctors had done just as those young jewish doctors and others did?
4. In Chapter 18 the creation of mouse-HeLa hybrids are discussed. Do you believe that creating hybrids or clones are "an assault on life" as the British press reported. Do you think that scientists can really cross the line to become as the "mad scientists" depicted by such reports?
5. McKusick, a famous geneticist, has a well-meaning, but disrespectful assistant named Hsu. When she goes to draw blood from the Lacks family she adds to their problems and misunderstandings but is only intending to do good. Do you think this is the problem with science research and dealing with the public and individuals? Can there be a bridge between the two: their scientific intentions versus their respect for the human individual?
6. What do you think of Moore's case (Moore v. Golde & UCLA, 1984) and his spleen being sold for profit without his permission? Is this a legitimate legal concern for people since our cell lines could (though rare) be patented and sold without our knowledge or "permission"? Do you agree that once a tissue has left your body it is no longer your possession and you relinquish all rights to it to those obtaining that specimen?
7. Is there a distinction for you as pertaining to your rights in the size of the specimen taken? Would you ever question where your skin sample, blood, mole is being taken, if is being stored or used for research? I can easily imagine people wanting to know what will become of a removed member or organ, but is there any difference between those and a small sample because they all contain your genetic information?
8.Skloot uses the personal conversations and words of the Lacks family throughout the book to tell this story. Do you think that this method adds or takes away from Henrietta's story? Do you feel manipulated to care or form opinions about the family or is it a distraction from the important science and story of Henrietta? How is her family part of the legacy she has left behind? Is this more a story of Deborah than Henrietta?
9. Deborah never got to hear how all of her conversations with Rebecca would sound as written in the book. Some of her words and behavior sound crazy, incoherent, and could be an embarrassment to her or her family. Deborah supposedly said, "If you pretty up how people spoke and change the things they said, that's dishonest." Do you think that Skloot put that quote in to excuse what she reveals? Do you feel Skloot took advantage of their ignorance or was she right to tell their story this way?
10. Do you believe we have a moral responsibility to allow ourselves, or at least small parts of ourselves, to be studied? Is complete informed consent always necessary, citing the argument by Korn about the soldier with Spanish flu from 1918 versus the Andrews argument comparing money with our bodies and that regardless of what good the money could do for society, we have a right to say where it goes (after we die). pp320-321.
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