Do your cells belong to you? Maybe they do. Henrietta Lacks descendants recognized as having rights

Henrietta Lacks was a poor black woman who had cervical cancer, and eventually died of it, in 1951. Some cells from this cancer, taken without her consent, have been used in research for decades. It has been estimated that laboratories have many tons of cells derived from Mrs. Lacks. Some of those cells have been found in cell cultures supposed to have been free of them. The cells are known as HeLa cells, and I was taught, when in graduate school, that they were from a Helen Lane. Not so.

I have previously posted about this situation, especially about a book on the story, by Rebecca Skloot, entitled The Immortal Life of Henrietta Lacks. The Lacks story has ethical, medical, racial and other interesting aspects.

There is recent news. The Lacks family has now been given some voice in the use of the cells from their grandmother. See here and here for news stories on this matter. It's about time!

Race, science and medical ethics - Henrietta Lacks and HeLa cells

I was recently privileged to read The Immortal Life of Henrietta Lacks, by Rebecca Skloot. (See here for a New York Times book review of the book, here for the Wikipedia article on the book, as well as here for a Wikipedia article on the late Mrs. Lacks.)

HeLa cells, the human cells now used most widely in culture, were taken from a sample tissue from a cancer in Mrs. Lacks. She didn't know that this was done. Some medical supply companies made billions off of her cells.

Every person who deals with medical patients in an office or a hospital should read this book. I won't re-tell it, but here are some of the lessons I got from the book:
1) Every person, regardless of race, sex, or knowledge, is entitled to respect as a patient, and, as far as possible, to informed consent -- they should be told the consequences of procedures they are about to undergo, so that they can understand they consequences.*

Henrietta Lacks, the descendant of slaves, was not usually told the consequences of the treatments she got, let alone told the risks, in any way, let alone in ways she could understand.

Her children did not know what a cell was, or, really what cancer is. They couldn't help their ignorance. Skloot, in the course of writing the book, saw to it that, finally, they did understand the basics of what happened to their mother.

2) Scientists can be pretty stupid. HeLa cells are hardy, and spread easily. They infected literally millions of dollars worth of other cell cultures that weren't supposed to be HeLa, but really were. Even when this was pointed out to them, most of the cell culture scientists didn't believe it, or take proper precautions to avoid more contamination.

3) According to Skloot, US law still does not give patients control over cells derived from them. They are deemed discarded by the patient, and the doctor or hospital is free to use them as they see fit. Maybe that's OK, maybe not, but something seems unfair about this matter.

Besides the above, the book is absorbing, scientifically, ethically, historically, and personally. Ms. Skloot has done the Lacks family, and all of us, an enormous service, and worked very hard, under adverse conditions, for years, to accomplish the writing.

Skloot is a science writer by profession. She claims no religious belief, and was amazed, and, I think, impacted, by the religious expression and belief of the Lacks family.

The author used some of the proceeds from her book to fund the Henrietta Lacks foundation, which attempts to help people who have made unwitting contributions to medical science, like Lacks.

Thanks for reading. Read Skloot.

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*A decade or so ago, I took a relative of mine, who was unable to read, to a hospital, for some routine matter. He was given a consent form, small print on both sides of normal-sized paper, and asked to sign it and return it, with the expectation that he do so immediately. The signature supposedly absolved the hospital from liability, should anything go wrong. He signed it, and I didn't object. I had been to the same hospital, and seen the same form, presented in the same way, a year or so before. I can read fairly rapidly, but it would have taken me at least 20 minutes to read and (maybe) understand the form. I did read enough to see that the form said that, in signing the document, you were certifying that you had read and understood it. This lawyer-inspired farce was mostly harmless, but it definitely wasn't informed consent! I would assume that the signature really wouldn't have exempted that hospital from claims for damage, in the event of negligence or malpractice.

Do your cells belong to you? Maybe not

The New York Times has published (only on-line, but print will be available soon) a review of The Immortal Life of Henrietta Lacks, which looks like it's going to be an important and interesting read.

Who was Henrietta Lacks, and why is she immortal? Henrietta Lacks was a poor black woman who died of cervical cancer in 1951. However, some cells from the cervical cancer that killed her -- literally tons of them -- are still dividing, and metabolizing -- alive, by many biological definitions.. See here for the Wikipedia article on these cells. Neither Mrs. Lacks, nor her family, gave permission for this use, and the family didn't even know about it for over a quarter of a century. Apparently, this could happen to your cells, or mine, according to the book review, and the Wikipedia article. The book is said to cover the life of Mrs. Lacks, and of her children, the science, and the ethical issues.

The first link in this post has a few photos of the Lacks family. Amazon has an extensive page on the book, linking to some podcasts by the author, Rebecca Skloot.

Thanks for reading!