Today's Baltimore Sun features a great OpEd by Ruth Faden, director of the bioethics institute at Johns Hopkins, exploring the ethical and moral issues raised by The Immortal Life of Henrietta Lacks, and its relevance to the current debate over health care reform. In it she says, among other things:
... Henrietta Lacks story touches the very heart of the
current debate over health care reform, and the need for universal
coverage and access to care. Her tale, like health care reform and the
ethics of biomedical science, is tied up in how the least of us live.We need a national conversation about more than health care costs and
cost shifting. We need one about the ethical foundations of access to
care and their relationship to biomedical science -- and what is the
right thing to do. It is to be hoped that the newly appointed
Presidential Commission for the Study of Bioethical Issues will get
that conversation going.Meanwhile, the saga of Henrietta Lacks tells us that without genuine
health care reform, her scientific legacy will forever overshadow her
human one.
Click here for full OpEd.
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While I appreciate you talking about all the reviews. I would much rather see more posts about your ideas and your opinions. Longer posts with good content would be wonderful.
This post is kind of bland... =\
I hope to be back soon to visit!
=)
I saw your book about a week ago. I can't wait to buy it. It looks like a interesting read. I am in the medical field particularly, nursing. When I first read the cover, I thought amazing. How sad. After thinking about it today and reading online about it, which I do have some medical background. I hate to say this must go on all the time without our knowledge. This is terriblly fantastic, but I am sure there is lots of stuff that goes on, with stem cells, research etc that goes on. It is terrible that when things get into man's hands without any kind of regulation, not just scientists but anyone thinks they can do what ever they want. It's too bad this happened to her, and her family. I can't wait to read your book. But I just wanted to let you know that what you started probably opened a can of worms. I hope it makes every one about what men with power and government can get away. I hope the book sales help the family. Good luck with your book and great success.
Susan Curtis
Myrtle Beach, SC.
Just a note to say how much I enjoyed your book -- it was incredibly well written and an important story. I've written a review on my site from a lay-person's perspective. I hope you'll write more in the future, your style is excellent.
Anne
This is an absolutely wonderful book that I only received yesterday in the post from Amazon.ca. I couldn't put it down & have just finished it. It is a very moving personal story of what seems to be an abstruse scientific issue -- the writing is masterful, the scholarship superb.An incredible story. Bravo and a tip of the tam-o'-shanter to you! As chair of a large Research Ethics Board I shall make your book recommended reading for its members. (PS You may be happy to know your book is at the top of the list for medical ethics books in Canada at amazon.ca - one ahead of my book! :)
Philip Hebert MD PhD
I am so loving your book--about 70% finished with it. The parts about your time with Deborah make me laugh out loud at times. What a great and difficult time you must have had writing this book!
Thanks, JO
I applaud the strength and determination it took to bring forward the story of Henrietta Lacks and the difficulties her family has faced throughout the years. As a health care professional I find ethics one of the hardest parts of my job. I can only hope that bringing this story to life will humanize research efforts and offer real consent to many of the ongoing and future research projects. We are forever indebted to the cells of Henrietta Lacks and the medical advances she has offered the international medical community. I look to share this story in hopes of championing for the medically underserved and those at risk of being taken advantage of for the sake of research. Thank you for such a quality text - I hope the story inspires ethical research practice and the respect for Ms. Lacks she deserves.
C. Meyer, RN, MSN, CEN
I enjoyed reading your book and it has given me much pause for thought. Strangely, I only found your blog when I was looking up "Patient Narratives" on PubMed and I came upon a recent article about your father, Floyd. That led me to his web page and on that a link to yours. "There are no accidents, there are only appointments."
Your book would be perfect for the kinds of programs that many colleges have where the entire community reads one book and discusses it over a month or so. Are any doing that now? I will see if there is interest here at Williams. I teach a course in Medical Humanities occasionally here (I am a local physician).
The Op-Ed author rightly says, "As the new book 'The Immortal Life of Henrietta Lacks' reminds us, behind every biological sample is a human being." Osler is famously, but erroneously quoted as saying, "It is more important to treat the patient who has the disease, than the disease the patient has." (It was probably Maimonides, but may go back even further). Similarly, exploring Henrietta Lacks's life and the fates of her relatives turns out to be more important than just focusing on the science (to me at least). Beyond health care, there are unnatural causes for illness which are rooted in societal inequities. These determine how we are sick and how we are well. These are difficult to escape and your moving narrative of HeLa's children exemplifies that. "Dale" would be alive and well today had she not been poor and black and second class in the Baltimore of her youth. This so-called "health care" we are all debating will not reverse the forces that make us ill or allow us to be "well."
I enjoyed reading your book and it has given me much pause for thought. Strangely, I only found your blog when I was looking up "Patient Narratives" on PubMed and I came upon a recent article about your father, Floyd. That led me to his web page and on that a link to yours. "There are no accidents, there are only appointments."
Your book would be perfect for the kinds of programs that many colleges have where the entire community reads one book and discusses it over a month or so. Are any doing that now? I will see if there is interest here at Williams. I teach a course in Medical Humanities occasionally here (I am a local physician).
The Op-Ed author rightly says, "As the new book 'The Immortal Life of Henrietta Lacks' reminds us, behind every biological sample is a human being." Osler is famously, but erroneously quoted as saying, "It is more important to treat the patient who has the disease, than the disease the patient has." (It was probably Maimonides, but may go back even further). Similarly, exploring Henrietta Lacks life and the fates of her relatives turns out to be more important than just focusing on the science (to me at least). Beyond health care, there are unnatural causes for illness which are rooted in societal inequities. These determine how we are sick and how we are well. These are difficult to escape and your moving narrative of HeLa's children exemplifies that. "Dale" would be alive and well today had she not been poor and black and second class in the Baltimore of her youth. This so-called "health care" we are all debating will not reverse the forces that make us ill or allow us to be "well."
I saw you speak at Politics and Prose Bookstore in Washington, DC recently. You have really done something here. You opened a door to a dialogue that's long overdue. You have told a very important story. You have touched a family and in the process many, many people. I wish you well and will not be surprised when you to win the Pulitzer Prize. I just know it.
I heard your interview with Terry Gross on WHYY's "Fresh Air" a short time ago and I was fascinated by the subject. Ordered the book up from the local library and waited for my turn to read it. Sat down this weekend and devoured it like it was a thriller. It is. Thank you for your balanced treatment of these complicated relationship, social-political, educational, ethical, and scientific issues. What a wonderful piece of work.
I too came across previews for this book while researching Pubmed and NIH articles in the hopes of researching a rare and aggressive cancer that took my own mother and the potential links to my own illness. I am a passionate advocate of tolerance and hold a BA in Math and Science.
I knew I must have this book. After two weeks of searching
(all the local book stores were sold out), a dear friend at a publishing company got a hold of one for me.
When I received it, I literally devoured the contents in less than 24 hours. Brilliantly written with compassion, honesty and an understanding of not just science but the human soul. As someone who understands, intimately, the complex world of medicine and research studies and how a lack of educational exposure and understanding leaves an individual powerless, I applaud efforts for setting up an educational fund to the family members who remain. A final thank you to Henrietta who continues to save lives.
Nice job on Stephen Colbert last night. Loved the Centipede cells. Also I enjoyed the audiobook version of your book very much. A well done production.
Things have not changed at Johns Hopkins: http://adventuresincardiology.com
The Balt Sun link provided does not get you to the Op-Ed piece mentioned. Here is a better link.
http://www.baltimoresun.com/news/opinion/oped/bal-op.lacks12feb12,0,746…