Hi, Bookies:
Welcome back! Before we dive into this week’s discussion, I’d like to share some exciting news: Rebecca Skloot has agreed to answer questions! If there is anything that you would like to ask the author, please post your questions in the comments section by Thursday, April 21, at 11:59 p.m. EST.
In this week’s reading, Skloot introduces us to Mo, another cell line of both medical and financial importance. John Moore was diagnosed with hairy-cell leukemia in 1976 and, as a result, had his spleen removed. Moore’s doctor David Golde recognized that his patient’s cells produced rare proteins that would make them valuable to pharmaceutical companies. As a result, Golde started using Moore’s tissues to develop the cell line Mo. After the surgery, Moore flew from Seattle to Los Angeles every few months for seven years for “follow-up exams,” unaware that Golde actually needed these meetings to obtain more tissue samples for cell culture. Moore eventually sued Golde, and the case went through various trials and appeals before it landed in the Supreme Court of California. Though the court acknowledged that Golde was wrong for both failing to obtain informed consent and for taking advantage of his position as a doctor, Moore did not receive any financial compensation. According to the court’s decision, Moore no longer had rights to his tissues and cells once they were removed from his body. Giving patients’ property rights to their tissues, the court argued, would “destroy…economic incentive” and “hinder research.”
This decision doesn’t sit well with me. A blood test or biopsy needle, such as Henrietta endured, is a far cry from making someone believe that he needed to fly to a specialist multiple times a year, as Golde did with Moore. Gey also developed HeLa for medical research; neither he nor John Hopkins ever profited from the cell line. Golde, on the other hand, was purposely misleading his patient for the sake of developing a cell line that he would sell to a pharmaceutical company for a hefty profit. I think that Moore deserved compensation. Do you agree? Or do you find the court’s ruling to be fair?
Back in Baltimore, Deborah and Skloot have finally joined forces and are delving deeper into Henrietta’s life and legacy together. I was impressed by Deborah’s terms when she agreed to take part in the research: Deborah made Skloot promise to use Henrietta’s real name and to reveal the truth about Henrietta’s institutionalized eldest daughter, Elsie. There is something noble about Deborah’s conditions, especially when you consider that her siblings were unsupportive of Deborah’s decision to help Skloot without a financial incentive. After a lifetime of being kept in the dark about her mother and her sister, Deborah thought that learning about her family would be its own reward. Though Skloot couldn’t pay the Lacks family for their story, she did promise to set up an educational scholarship for Henrietta’s descendants if the book ever sold (a promise Skloot kept, according to the afterword). Do you think this was a fair bargain? Should Skloot have done more?
The last thought that I want to leave you with is about health insurance. According to the Centers for Disease Control and Prevention, nearly 50 million Americans were without health insurance when surveyed between January and September of 2010. Henrietta Lacks was peppered with the hardships of living without health coverage (Day’s gangrenous feet and Sonny’s $125,000 debt for bypass surgery are both stirring examples). Skloot presents the reader with both sides of the debate around whether Gey had a right to take Henrietta’s cells in the first place and, once the cell line was created, whether the Lacks family had a right to the HeLa fortune. However, I think that Deborah cut right to the heart of this issue when she said:
“When people hear about my mother cells they always say, ‘Oh y’all could be rich! Y’all gotta sue John Hopkin, ya’ll got to do this and that.’ But I don’t want that. . . . Truth be told, I can’t get mad at science, because it help people live, and I’d be a mess without it. I’m a walking drugstore! I can’t say nuthin bad about science, but I won’t lie, I would like some health insurance so I don’t got to pay all that money every month for drugs my mother cells probably helped make.”Thank you all for reading along with me! I’ve enjoyed both Henrietta Lacks and being a part of the No Obligation Book Club more than I can say. I’ll be reading any comments you leave about Part 3, so please post your thoughts, feedback, and questions for the author—I look forward to reading them!
—Erin
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I think this is still a very murky area of science. As a nurse practitioner, I take tissue samples from patients on a daily basis, and I have never had a conversation with a patient about what will happen to that tissue when testing is completed. As a college student, I spent a summer working as a runner in a big OR, transporting surgical samples to the pathology lab. I carried amputated legs, breasts taken by mastectomy, and many other tissues. I’m sure the owners of these tissues weren’t asked either.
Informed consent has come a long way since Henrietta’s day, but I still don’t think ownership of tissues after removal is clear. If the patient isn’t asked, that isn’t consent to make millions on it, but it also doesn’t prohibit further research. I’m interested to know what others think is the *right* answer here. I honestly can’t see asking every patient about every tissue and blood sample, but maybe that’s where we’re headed?
This was definitely my favorite read for 2010 and I especially admired the research Ms. Skloot did on the subject and the family. Have any members of Henrietta’s family presented to date with the credentials necessary to qualify for the educational scholarshipss you are setting up? If so, which ones and please give the details.
Thank you for taking questions.
Virginia
I agree with Leah about the issues surrounding informed consent. A real quagmire if there ever was one. My question for Ms Skloot concerns this issue. In your research for this book, did you form an opinion about the parameters if informed consent and tissue ownership? What is it and why?
I really enjoyed this book! Thank you!
I loved this book as well. It was a fascinating read. As a journalist, one thing that really stood out to me was how Skloot really became a focus in her own story. I’m curious if she was also surprised by this or if she expected it. Also, did she struggle with writing her personal experience as part of the book? Thank you again for hosting the read-along, wonderful book!
I enjoyed this book much more than I thought I would. As a stereotypical English literature major, I tend to shy away from books I deem too science oriented. In the end I was drawn into the book by the human story. What was funny to me was at the beginning of the story I was outraged that they had taken Henrietta’s cells without consent. However, as I got deeper into the journey and gained understanding of the scientific aspect right alongside Deborah, my opinion started to change. Now that I am just at the end I am more at peace with the way the cells were taken. Would Henrietta have truly understand what her cells could do for modern medicine? No cell lines before Henrietta’s had multiplied like hers and become immortal so would Dr.’s have even understood what they were getting informed consent for? I think I understand the supreme courts decision because it takes the education and the work of the researchers to cause cells to have value not their simple fact of exigence. My question for Miss Rebecca is simple was the most troubling part of the book writing and research experience for you? Also what scientific / moral quagmire are you going to tackle next? I can’t wait to see what’s next from you. You have a talent for making science interesting!
This book was a great read. I do think Moore deserved compensation (especially for all the traveling he did – that must have cost a fortune), as did Henrietta’s family. Not from Johns Hopkins, but definitely from the others who are selling her cells for a hefty sum. Or, maybe just one big pay off.
Also, I recently had an experience with a hospital asking for some of my tissue. There was a form that I could sign that would allow them to use my tissue in their labs for their scientific means. I have to resign this form every year and I can choose to stop their use of it at any time. After reading this book I want to look at the form again, but, like Skloot said, if my tissue can benefit others I would be okay with that.
The education fund is nice compensation for the Lacks family but I still feel like Skloot could have given them a percentage of the books sales. Although, if she didn’t trust them not to squander the money than I can see the reason behind just the education fund.
What a great book, I am so glad that I read it. In this last section I was surprised and disappointed in Lawrence and Sonny that they were so disinterested in their mothers cells until they thought they could get money out of it. I was glad to see the Deborah stuck to her guns and moved forward to do the research to learn as much as she could. I was so impressed that she wanted so badly to educate herself further and tried to so hard. It’s too bad that she became ill and did not feel that she could reach that goal. But true to form as Henrietta’s daughter, she made sure she did what she could so that her grandchildren got their education. How sad that she never did get an education for herself.
I absolutely do not think the court’s ruling in the Moore case was fair. Actually I think it was pretty insane and can’t imagine how they could get away with that. It is just absurd that the court somehow how the right to tell the public that they DON’T have a right to their own body parts. So now the Supreme Court can dictate to the people that they have no say over what happens to their own body parts and pieces. “Giving patients’ property right to their tissues….” What? I was born with rights to my tissues; the court does not GIVE me those rights. That definitely does not sit right with me at all. There is so much “research” out there that is very questionable and I should absolutely have the right to not have my tissue used for something that I may find objectionable for personal or religious reasosn. I have had several pre-cancers removed from my arms and face, I had my appendix out when I was a kid and recently had my gallbladder out. I never thought about what happened to those items, I guess I just assumed they were to be disposed of. Now I wonder. If I ever again have to have something removed from me I will ask what happens to that item. I might just have to take it home and dispose of it myself to be sure it does not end up being used for who knows what. I absolutely would donate my parts to medical research, especially now that I know how much it could help other people but I think I have a right to know what it’s being used for and have the choice to donate or not.
Deborah wanted the world to know about her mother, she was not too worried about getting money for it. Skloot spent years of her life researching Henrietta Lacks, spend countless hours working with uncooperative family members and helping Deborah. Should she have done more? What more could she have done? She did exactly what Deborah wanted by writing the book that let everyone know her mother’s story and helping her find out about her sister. I don’t think Deborah would have expected Skloot to pay them, I think she would be very happy and satisfied that her long awaited dream came true and someone honest told the world about Henrietta and Elsie Lacks.
I,like Henrietta and John Moore had a immortal cell line developed from my tissue in 1986. The cell line, MCF10, is unusual in that it is normal.The Detroit Free Press did a article on me Feb.20Th, 2011. I share many of the same experiences that both of them had.Henrietta’s and my cells are partnered in many research articles. The courts have ruled that no one
has any rights to their blood or tissue after it leaves their body.
My cells are now being sold for $279 (research) and $6000 (commercial),per vial. I do not have the answers to the problems that face the research community. I do know that much needs to be done to change things. Now that the public is becomming aware of the ethics involved, I feel change is going to happen.
Thanks to Rebecca Skloot for bringing this story out in the open.
Wow – Susan, that is amazing to hear that your cells have been used for research. It would be interesting to hear how that happened for you and I appreciate that people like yourself are willing to be involved in this for the advancement of science. My mother suffers from Parkinson’s Disease and I am hopeful that cellular research will lead to advances in this awful disease and many others.
I really enjoyed this book much more than I expected too and mostly because Ms. Skloot humanized Henrietta, Deborah and the rest of the family. I have to admit that I don’t particularly like Day, Henrietta’s husband and the children’s father as he came across as not very supportive of his wife or his children but I guess I don’t know of hte obstacles he must have faced. I know it is too late to include my question but I am curious as to how much money has been raised for the scholarship fund that Ms. Skloot set up and I wonder if Deborah’s grandson, Devon?, made it too college.
It’s hard to convey to someone what it feels like to be in my position. On one hand I’m excited and proud that my cells (MCF10) are on the front lines of research, but there is a part of me that resents the fact I have absolutly no say in any aspect of my tissue. It would be like asking Rebecca Skloot to give up all profits, ownership, and control over her book for the good of medicine. It’s and interesting thought.
What a great discussion! Thank you Erin and the team at Real Simple.
Bookies: we’d love to hear your story over on Rebecca Skloot’s website.
We’ve launched the HeLa Forum, where you can share your story and join the conversation.
http://rebeccaskloot.com/the-immortal-life/readers-talk/hela-forum/
We’ve also launched Readers Talk, where you can watch videos of other HeLa fans sharing their reading experience. We’d love to see your video, too!
http://rebeccaskloot.com/the-immortal-life/readers-talk/