2. The book also relates a lot of information about the treatment of blacks by the medical profession such as the quality of care they received and their use in research studies. Which stories did you find most interesting or alarming? What kind of consequences, both social and scientific, did these incidents have?
3. Rebecca Skloot went beyond writing a book about the HeLa cell line. She alternates between the story of the cells and the process of researching for this story. Why did she choose to provide a first person account of her interactions with the Lacks family and with scientists as she worked to write this book? Do you think this was an effective technique?
4. Trace the changing relationship between Skloot and Deborah. Why was it so difficult for Skloot to earn Deborah’s trust? In what ways did their friendship change them and their attitudes toward Henrietta Lacks and her immortal cells?
5. Luckily, this book has a Reading Group Guide. Feel free to add your response to any of the questions in the book.
1. A major ethical point is what does one do when the benefit of millions is at odds with a patients personal rights. However, in the story, the patient isn't even given the chance to exercise their rights. I feel helping the disfortunate amongst us doesn't mean they give up their rights. Social welfare is an obligation upon society, not something we barter to use the poor for research or anything else.
ReplyDelete2. The most alarming story was the one in which patients were allowed to die for experimentation even when the deaths could have been prevented. (I believe this occured from the 20s to the 40s)
3. I personally like this approach. It tells the story in multiple dimensions and holds my interest. It also gives an in-depth understanding of why so little is known about the origin of the cells.
4. Its difficult to earn Deborah's trust because the family has been taken advantage of so many times. Deborah trusts her family over a stranger and the family tells Deborah to not talk to Skloot.
Before answering these questions, I just want to let you know that I had checked out this book from the library and no longer have it with me, so I can’t really cite as many specific details from the story as well as I wish I could. Still, I’m doing the best I can, but if I screw something up, just let me know! Also, I forgot that I didn’t post this online right away (I wrote a draft first), so sorry that it took me so long! And this really was a great book…
ReplyDelete1. A major ethical issue raised in this book concerns the patient’s right to know if samples have been taken from them and how these samples will be used. Personally, I feel that scientists should be allowed to collect samples from materials that would otherwise be discarded, but patients must be notified and fully informed. Additionally, it is ridiculous that only the scientist who harvested these materials would be able to profit from them. Patients should at least get 50% of any proceeds resulting from research on or the use of their materials. Donors should not be able to exploit incredible amounts of money from scientists in order to study their unique physiology, but neither should scientists be able to exploit their subjects by harvesting valuable materials from them with no compensation.
2. To me, the most alarming story about the mistreatment of patients by the medical profession was the abuse at the mental institution where Henrietta’s oldest daughter was placed. I know these patients were not only black, but the situation is just so abhorrent that I cannot forget it. Reading about how these trusted medical professionals drilled holes in people’s heads, filled the space with air, and then photographed them just made me feel sick. Scientifically, I suppose they did gain images that would not have been possible otherwise at the time, for whatever good that accomplished. However, these professionals betrayed the trust of countless families and took advantage of individuals too ill to effectively protest. It was a horrendous situation and I am so glad that the overcrowding and abuse finally gained attention and came to a stop.
3. Rebecca Skloot chose to write her account of the research and investigation she conducted for the story using a first-person perspective. This technique allows her to make the tale personally engaging and demonstrate how the effects of HeLa still reach into the lives of her family members and descendants. The reader cannot help but feel compassion for these people, especially knowing all the intimate details of the good and bad of their lives. Additionally, this narrative technique emphasizes the way that Rebecca herself became part of the story as she gained acceptance with the family and helped them develop understanding regarding Henrietta and HeLa. This was definitely a very effective strategy to use, and it allowed the reader to see the family as real individuals rather than flat characters or vague stereotypes.
ReplyDelete4. One of the main reasons it was so difficult for Rebecca to gain Deborah’s trust was because Deborah’s trust had been horribly abused in the past. Sir-Lord-What’s-His-Name, who Deborah had come to trust completely, turned out to be nothing more than a conman who viciously turned on the family and caused immense psychological harm and harassment with his frivolous lawsuits. Additionally, Henrietta’s family had little understanding of HeLa and all that had happened to Henrietta, resulting in beliefs that combined reality and fiction in frightening ways. Friendship slowly developed as Rebecca gained the trust of the family, particularly Deborah, and helped them discover the truth. The growth of understanding reduced the fears of the family and facilitated their acceptance of Rebecca.
5. I did not read, or at least don’t remember reading, the Reading Group Guide for this book. However, I just wanted to add that I greatly enjoyed this book (I tried for weeks to get my sister to read it, though she stubbornly refused). Like almost everyone, I have had relatives who died from cancer. Cancer is such a frightening concept, and when such a mysterious affliction is combined with the phenomenon of immortality, the result feels unnatural and disturbing. However, great benefits have also come from this abnormality, which complicates the feeling on this subject even further. This is a very powerful book. Additionally, Henrietta’s family makes the tale even more profoundly moving. Their unique situation made a profound psychological impact on the family, and particularly on Deborah, and the reader cannot help but feel for the woman. She had such a good heart, and it is terrible that she suffered so much because of the way Henrietta and HeLa was handled. I am glad that Rebecca was able to help her discover the truth and reach some degree of peace concerning the situation. No family should ever be treated the way Henrietta’s family was, and I hope the issues regarding patients rights will be thoroughly examined and justly settled before any more families are burdened with such emotionally- and ethically-complicated circumstances.