Henrietta Lacks and Inappropriate Outrage

 

A woman named Henrietta Lacks visited Johns Hopkins medical center in 1951 because of vaginal bleeding.  The source turned out to be a particularly aggressive and invulnerable malignant tumor which killed her within the year. 

Since then, she has become a symbol of many things, the inspiration--if one may call what followed "inspired"-- for a book, an Oprah Winfrey movie, and lawsuits.

Scientists at Hopkins took cells from Ms. Lacks's tumor and grew them in a laboratory, using them as a source for human cells which had not been possible to grow before: the relentless vigor with which these cells divided and reproduced was unconstrained by the usual genetic programs which make cells wither and die. Normal cells are programmed, genetically, to die, but some cancer cells do not die, which is what allows them to grow, invade, overgrow the garden and choke it out. The cells from Ms. Lacks's tumor were robust and would not wither in the petri dishes and die, but they could be used for breakthroughs in polio vaccine, for studies into which agents could be used to kill cancer. 

Ms. Lacks's misfortune became a hugely fortunate source which benefited public health, helped vanquish polio, helped save lives of cancer patients for generations after her.

Enter the author, the TV stars, the lawyers.

Ms. Lacks was Black. 

Any ethical analysis must begin with the facts, and the Phantom admits outright, he has not read the book, "The Immortal Life of Henrietta Lacks" and does not intend to.

Ms. Lacks was Black and a connection--an entirely bogus connection--was made to  Black patients who were used as subjects so white doctors could study syphilis at Tuskegee. Of course, in the case of those infamous Tuskegee experiments, the unsuspecting Black "subjects" were not treated with penicillin by the "scientists." When the study began, in 1932, there was no treatment, but by 1947 there was a treatment and yet none of the "subjects" were treated. The disease was allowed to progress so the scientists could study it, without regard to the harm it did the "subjects." 

In Ms. Lacks's case every treatment known to man was given her, to no avail. She surely did not "miss" the cancer cells they removed from her. 

But the commonality was they were Black and the Tuskegee men were not asked for "informed consent" and neither was Ms. Lacks. But even in the age of "informed consent" the purpose is ordinarily to be sure a patient is aware of the risks of treatment, and of no treatment. Informed consent is not ordinarily concerned with what happens with discarded tissue or cells.

Actually, one might argue nothing was done "to" Ms. Lacks's body--something was done to cells removed from her body, and what was done to those cells was done to them when they were no longer part of her.

It goes beyond saying that Ms. Lacks's cells were valuable not because of anything Ms. Lacks did or did not do but because of the brain power of the men who used them. Of course, you could say if Ms. Lacks's home sat atop an oilfield, then the White men who wanted to possess that land would have had to pay her for her property and then they could use their technology to profit from it, even though she had no idea how to drill for oil or extract it, so the fact she did not know how to use her property does not mean she has no right to profit from it. 

But in this case, the "property" has no intrinsic worth to anyone other than that scientist in the lab. It was his special knowledge which made it valuable. Those cells were not like oil or gold, which anyone could exploit, but they became valuable only because of what the Hopkins scientist, Dr. Gey, noticed about them and what he was able to do with them. Does the Mona Lisa claim the fortune from the sale of her portrait? It the value of that painting inherent in her face, or in the genius of the artist?

But this is a legal, not an ethical argument. 

In some ways this argument is more like the claim someone might make that a photograph taken of her and used to sell some product or another should profit her, even though she did not take the photograph. Models, after all, are paid for their photographs. Can that nurse who was photographed being kissed by an exuberant sailor in Times Square on VE Day claim a share of profits Life Magazine made using her likeness?

It should also be noted that at Hopkins that same day almost certainly, some White patient had an appendix removed and that piece of her  was handled without her permission after it was removed. Women, on another ward, gave birth that same day, elsewhere in the same hospital, and their placentas were hauled off and they were never told what happened to that part of them. For that matter, stools were removed from patients, deposited in bedpans and flushed down toilets without written permission from the patients. 

On the other hand, one could argue, suppose a patient had a tattoo and after his death that skin was used to make a lampshade without his permission? But then there is a certain aspect of ghoulishness and one can imagine the dead person would be horrified to learn, if he were looking down from Heaven, of the use his skin had been put to. 

Ms. Lacks, one imagines would look down from Heaven and say, "Hallelujah!" about the use to which her cells were put.

There is that wonderful scene in "O Brother, Where Art Thou" when the escaped (White) convicts give a ride to a Black man they pick up along a road, who mentions he has sold his soul to the devil for a brand new guitar.  This horrifies one of his new friends, who expostulates, "Oh, how could you sell your soul for a guitar?"

And the man shrugs and replies, "Well, I wasn't using it any way."

And that is true for Henrietta Lacks: she was not using those tumor cells. Had she been asked, had she been able to fathom the explanation from the lab guy, Dr. Gey, what he hoped to do with those cells, how he hoped to grow them in his lab dishes, is there any doubt that she would have said, "Of, course!"?

How many times has the phantom heard a cancer patient say, "Well, if they can learn something from my disease to help others, I'd feel better."?

The fact is, this is not a moral tale. This at best, is a tale of procedure, of propriety, maybe of good manners, or even respect, but even the act of asking, in a practical sense, would make the average patient grow suspicious and ask, "Why would they feel they have to ask?" They don't ask when they take your gall bladder out what you want done with it.

And then, there is the money angle. In our society money poisons many things.

A poor Black family is told a bunch of  White doctors grew rich selling the cell line they made from Henrietta's cells to other rich White doctors in labs around the world. What are they supposed to think? We got robbed! Deal us in!

The Phantom does not blame Ms. Lacks's family. 

But he does blame Ophrah Winfrey and all those who sought to sanctimoniously enrich themselves by exploiting the false allegations of this story as one that had anything to do with racism.  Had this woman been White, there would have been no story.

Well, that's not exactly true. There would have been the story of a poor woman who had a nasty, lethal tumor, who sought help at Johns Hopkins, where they were unable to help her but where they were smart enough to use her misfortune to benefit millions of future patients: kids who would have got polio, adults who would have died from various sorts of cancer. 

It's the sort of story that gives liberalism a bad name.