Long story short, in 1951 a poor black woman died of advanced cervical cancer. Without her knowledge or consent, her doctor took biopsies of her cervix to grow cells to experiment on. The healthy ones died…the cancerous ones have been used ever since, growing cell lines that helped develop the polio and HPV vaccines, among others. Her family never knew until doctors came looking for them, to request samples of their blood so they could screen for Henrietta’s DNA contaminating other cell lines (it seems her cells are EVERYWHERE.)
I was astonished at how much I take for granted informed consent, which didn’t exist a few decades ago. One of her daughters was mentally disabled and was put into a home, where she died when she was 15. It was quite normal to perform experiments on the patients, including a horrific procedure where holes are drilled into the skull and the fluid removed so clear x-rays could be taken to examine the brain. That pesky fluid got in the way of the x-rays, you see. The patients suffered headaches and nausea for months until the skull filled up again.
I guess the debate is settled…her cells have done so much for medical advancement there’s no going back now. Have any of our DoperDocs heard of Henrietta Lacks?
I’ve never read the book, but I’ve certainly heard the basic story. It’s an interesting counterpoint to a lot of the debates about what constitutes “human life”, and related topics: Are HeLa cells alive? Certainly. Are they human? It’s hard to say what else they would be. Are they therefore people? Most would say “no”… but then you have to explore just why you say no.
I can’t remember if I first heard of HeLa cells on the SDMB, through a friend who has a PhD in molecular biology or in an alternative weekly paper.
There was a book Acres Of Skin about experiments performed on inmates of a Philadelphia prison before it became illegal to use inmates for experiments. One inmate recounted that a one inch incision was made in his lower back. A gauze pad was inserted in the wound. The incision was sewn up. A week later, the incision was re-opened and the pad removed. All this was done without anasthetic. He was never told the purpose of the procedure.
I also saw on either 20/20 or 60 Minutes, that developmentally disabled patients at many facilities in the US were often used for experiments.
I read the book and liked it so much I later led a discussion group about it at my church. I thought it was a fascinating look at the evolving standards of scientific research, medical ethics and race relations in the U.S. I’m glad that the author has since established a scholarship fund for the Lacks family (and wish Johns Hopkins would kick in a respectable sum): http://henriettalacksfoundation.org/
I learned about the cell line and its origin in an undergraduate cell biology class in the '70s, but in a sanitized version omitting any mention of the ethically dubious aspects of the situation. Even the donor’s real name was suppressed; we were taught that the cells came from a woman named “Helen Lane.”
I’m not a doctor, but I’ve used her cells in experiments in college. They warned us to be very careful not to get them into the other cell lines, because they’d take over. I’ve read that several cell lines were found to be contaminated with HeLa cells. Her story is very sad, but fascinating.
You might be interested in this book http://www.amazon.com/Conspiracy-Cells-Immortal-Medical-Scandal/dp/0887060994 from 1986 (an excerpt from this book is where I first heard of HeLa); it focuses on the way the research community discovered (and often failed to respond appropriately to) that so many of their cell cultures were really HeLa.
Thanks. Yes, Skloot addressed the aggressiveness of Lacks’s cells and how many other cell lines were contaminated or taken over by them - and the persistent denial of many researchers that anything of the sort had happened.
I found the story fascinating, and the book was very interesting. It’s been a few years since I read it, but I remember thinking the book could have been edited a little better. I enjoyed the story of her family now, but I think a lot of it could have been cut out, and more focus placed on Henrietta’s cells, and the science aspect of it. I get that’s not the target audience and I’m probably in the minority here.
First they’re sledging the bastard doctors for nicking her cells, then forgetting about their work (all Henrietta did was get sick and die) when putting their hands out.
I work at NHGRI which is where I first heard of it. According to the infomercial that plays in the lobby, NIH reached a settlement with the Lacks family in 2013.
It makes me wonder what would have happened had the Lacks family refused.
I also feel that if the Lacks family didn’t get at least a couple if million out of the deal then they were cheated.