White Coat Underground

This is a special shout out to the doctors and scientists out there. Everything we do in our fields has repercussions, often unexpected ones. Because of this, we strive to practice ethically to help prevent or minimize negative repercussions.

This discussion comes up specifically as an epiphenomenon of the release of The Immortal Life of Henrietta Lacks (my full review can be found here.) How one reacts to this book would, I suppose, depend on your perspective. A neighbor of the Lacks’s might react quite differently than a 22 year old doctoral student. And that’s really the point.

This book should be required reading for young scientists and medical students. Ethical practice is important because it recognizes the fact that many negative outcomes are unexpected, and that we as physicians and scientists cannot always anticipate these negative outcomes.

It’s good to see some of the comments appearing online about the book, even though many of these are from folks who haven’t read it (it’s being released on February 2nd). It’s natural to become defensive when your beliefs are questioned. Some of the more interesting comments appeared at Ed Yong’s place. To catch you up, HeLa is cell culture used in labs around the world. It was derived from a young woman named Henrietta Lacks, a woman dying of cervical cancer in a segregated hospital in 1950′s America.

I have to say I completely disagree. Cell lines are derived from Humans on a regular basis, I use cells from a man who died from colon cancer and a young girl who had neuroblastoma. What exactly is the issue here? Would this fuss be made if she hadn’t been black and poor? I doubt it.

Her cells were useful but they’re not unique and why should her family get money for her cells when other families don’t? I’ve read an article by the author of this book and it was self aggrandising overblown nonsense.

Trying to conflate the real racially motivated problems in the US with this type of cancer research is just insulting to everyone involved, in my opinion.

There are a few misconceptions here. First of all, HeLa was unique. It was the first, and for a long time only, immortalized human cell line. And there was no “fuss” until quite recently—that’s the point. Not one made a fuss because there was no expectation of consent or privacy for a black woman in segregated America. No all “real racially motivated problems” (sic) are a cross burning on a lawn. If you read the book, you will find a cross-section of the mistreatments of patients, especially black patients, at the hands of our medical system. This includes not only the Tuskegee Syphilis disaster but also the imprisonment and torture (and forced labor) of the mentally ill and involuntary sterilization. And that’s just for starters.

I also disagree. The hela cells would have been taken during the normal procedures to try and save her life. Neither the doctors or the hospital have to have consent to use the tissues removed from the body through cancer treatments, whether they are Black, White, rich or poor. Thousands of black and white men and women have had their cells used for research and have saved thousands of lives.

Some more misconceptions. One of the roots of this problem is the ambiguity of your phrase, ”hela (sic) cells would have been taken during the normal procedures to try and save her life.” Did she think the cells were taken in order to save her life? Or were they simply removed coincident to a vital medical procedure? And should she have been informed of the difference?

Both of these comments show a “perspective problem”. If you are born and raised in a family with a legacy of mistreatment or apathy on the part of the medical system, the baggage you bring with you is far different than if you were born white, male, non-poor and, I would argue, recently.

What this book does brilliantly is highlight these issues in a very personal way, but the author also has included significant information on the legal and ethical background of human tissue culture.

Go and read it.

Comments

#1 Rowan
January 31, 2010

I read excerpts of the book in the latest issue of O Magazine while I was at the salon recently for a hair appointment. What an incredible story both from the scientific perspective as well as the ethical one.

I look forward to picking up a copy of the book.
#2 health nbsp
February 1, 2010

science life medical in findrxonline this very good information
#3 Calli Arcale
February 1, 2010

Neither the doctors or the hospital have to have consent to use the tissues removed from the body through cancer treatments, whether they are Black, White, rich or poor.

I hope that commenter isn’t an actual doctor. The consent forms I’ve filled out for various medical procedures suggest that he is quite wrong about that. Whenever I’ve had a procedure, I’ve been asked to sign a form saying I give consent for tissues to be used in research. I always do; I’m glad to help science in any way I can. But it’s not obligatory, and I do not believe hospitals have the authority to use our tissues any way they see fit. They have be authorized by the patients themselves (or the patient’s guardian).

I definitely want to read this book.
#4 Perky Skeptic
February 1, 2010

I will definitely pick up a copy of this book. I was in college when I first heard of HeLa cells, and a snippet of the story behind them. My reaction was anger that this poor woman died and the cancer that killed her lives on. Gah. Then I thought what an amazing thing that a lifeform created by her own flesh and blood should have attained medical immortality and serve human understanding, and what a great thing that was, but what a bitter pricetag for her. Gah!

Anyway, I will be reading the book.
#5 Nathan Myers
February 1, 2010

I wonder whether the book goes into how many years worth of cancer research were tainted to the point of worthlessness by HeLa cells opportunistically colonizing cultures of everything else, leading researchers to conclude, in effect, that all cancers were nearly alike. Aren’t there still myths left over from those days, that like HeLa cells, just won’t die?
#6 PalMD
February 1, 2010

The book, in fact does go into some detail about this…it’s a good read.
#7 The Perky Skeptic
February 2, 2010

Something in me wants to harness these cells for something useful to humans– make ‘em earn their keep by producing insulin or something. Little freeloaders! They’ll be developing opposable thumbs and language skills next.

I will now shut up until I actually learn something about them.
#8 Joe
February 3, 2010

Seems like there’s a lot of misplaced ethical hypothesizing going on on several SB blogs about this book. Surely, the story of HeLa could have been written differently and more fairly, but the (significant) ethics of today only exist BECAUSE if this story, not in spite of it. It was a groundbreaking miracle, and it is at least plausible to imagine it happening to someone of a different background. We should caution ourselves not to over-react and extend opinions into situations today, and instead focus on how it shows how far we have come. http://itsokaytobesmart.blogspot.com/
#9 Williams
February 4, 2010

I have read this post and this has made me inquisitive about this book. I am really looking forward to read this book.

Smoke Relief
#10 CH
April 11, 2010

I have used her cells (called HL cells) and to be honest I cried when I read the book. There has been a scholarship fund set up for her descendants. What if each of us who used the cells donated to it?