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. 

Down And Out in the Meritocracy

 

Whenever I am feeling particularly maschositic...

Or whenever I am seized by a deep sense of resentment that I was never chosen for the best college or the leadership of a major corporation or as the main script writer for a classic TV series...

I bring myself down to earth by opening up whatever New Yorker magazine I may have at hand, turn to the final page and examine the Cartoon Caption contest.

It is there I can feel fully cognizant of just how average, ordinary, how undistinguished and unworthy of the idea of "first rate" I truly am.

Displayed there is a single, caption-less cartoon for my consideration and I usually draw a complete blank, struggle to offer some utterly prosaic uninspired idea and then collapse in a puddle of self aware self rebuke.

Then, to really twist the blade in that space between my ribs, I read over the "finalists" suggestion from the contest the week before and am at once dazzled by their brilliance--"brilliant" that word so overused as to be almost meaningless now, but the best description of what I find there. And in the face of the three extraordinary offerings from my fellow citizens, I sink to the bottom of my own well of collapsed self regard and gasp.

The only salutatory part is once I am at rock bottom, I have achieved getting to the point where everything else has got to be up from there. 

When I was in middle school (then called "junior high") in Montgomery County, Maryland in some capricious lark, no doubt launched by a bored bureaucrat in the depths of the Department of Education, they administered an examination to some unsuspecting cohort of students, who were spared English class that day, sat at their desks and presented with an SAT like test booklet. Breaking that seal with your #2 pencil that day unleashed a different experience from what we usually expected. The questions were not multiple choice but required essays, handwritten in those days, which presented its own special sort of bias, but there you have it. 

Each question was shown below a picture, a photo, a painting and the student was asked to comment on its meaning, to write a paragraph or two about the image.

One frame was left blank. The classic blank canvas, and this was a particularly important question. Some students simply wrote there must be some error here because there was no image on the copy of the test the student had been provided. (These students, we were later told, tended to be the students who scored highest later on the Princeton Scholastic Aptitude Test--the SAT. These students could see the game and prepare effectively for those concrete, there-is-always-the-answer-right-in-front-of- you type tests, but give them a blank page, not so much.)

Some students, confronted with the page wrote wonderful stories about a snowstorm with white out conditions. Others ruminated on what sort of state occurs before we are born. Others wrote about what comes after death. Some got so carried away by the blank page, they continued their answers on the back of the answer sheet. 

So, this experimental test was a game about creativity, imagination, the ability to express one's ideas using a pencil in hand.

You had to get the game, of course, and some of the straight A students with the high college boards, most of them actually, apparently did not get the game or if they did, they did not have that sort of intelligence or energy. These high SAT students got the game of the SAT, which required some learned concepts in math, some cunning to see the traps in the questions, some memory prowess and, in the case of syllogisms some feel for the variations in meaning in words or in difference between words like "to want" and "to need." 

But the rules for this test were different. A different game. 

I thought I did pretty well on that test, but, of course, never heard what anyone else, much less the test makers, thought. No scores were ever reported. Certainly, nobody from Harvard or Yale ever called saying they had read my exam and wanted me to come up and visit the campus. 

But now, looking at those blank spots for the captions in the New Yorker, I could appreciate the depths of my own unworthiness. 

Consider the #730 contest. Just look at that cartoon. For me, the important detail is in the expression on the lab rat's face, and that makes me choose the first answer below, but I would have been happy to come up with any of the finalist answers. Never could. My mind is just not that rich. Each of these answers is a reference to some social/cultural issue, and the last one is a jibe at that line about continuing a family tradition in the workplace. Each is beyond clever. Not me. 

But, there is a whiff of hope:  In a nation where at least half of the people find Donald Trump inspiring, there is some intelligent life buried under the red dust, and all you have to do to know it's there is to put a cartoon on the last page of The New Yorker and ask for suggested captions, and this life sprouts out, like photosynthesizing organisms reaching for the sun.

“I bet you also had to be twice as smart as the men.”

Eva Hess, Davis, Calif.

“And, when you get hungry, the cafeteria is to your right, left, left, right, left, straight, right, straight, left, and then you push on the big lever.”

Michael Moran, Evanston, Ill.

“They tell me your family has been doing lab work for generations.”

William Howard, New Fairfield, Conn.

The Great American Tune Out

 Sitting at a restaurant table in Washington, DC, Jimmy McNulty of "The Wire" a Baltimore policeman, chats over wine with Teresa Dagastino, a woman who grew up in Baltimore, but now makes a rich living in Washington, as a political consultant. 

The two have been enjoying each other carnally for a few weeks but hardly know each other, and Jimmy eventually insists that they actually have a conversation, go out to a restaurant, get to know each other a little. "I feel like I'm just a breathing machine for my penis," he says. So Teresa agrees to go out to dinner. 

She asks who he voted for in the last election, but McNulty is only vaguely aware who was even running for President, to Teresa's stupefaction. Politics is what she lives and breathes, after sex, she turns on TV news and comments about the on screen politicians.

She cannot believe McNulty is so indifferent to who is in the White House, much less who is in Congress.

He says none of them look much different to him, and in fact, whoever is in the White House at the moment would not know where Baltimore is, unless Air Force One had to crash land on Eutaw street.  From the perspective of a Baltimore City cop, living on the streets, the nuances of the State of the Union speech mean exactly nothing.

It's not exactly the point of view of any of the characters on West Wing, who agonize over every wrong word choice, who talk about "destroying" their opposition, by which they mean outwitting them or verbally besting them. 

The Phantom asked his assistant at work if she had voted. She is the mother of a ten year old, and she is Hispanic, married to a tatoo artist.  She had absently said she would vote days earlier, but never made it, and finally she  explained she didn't follow politics enough to really know who to vote for. This, is after many months of office chatter which revealed how foolish she thought Trump is. But for her, voting did not rank as more important than picking up take out after work, and going home to relieve her husband from day care duty.

Neither she nor her husband voted.

Martin Luther King noted "we cannot be satisfied as long as the Negro in Mississippi cannot vote and the Negro in New York believes he has nothing for which to vote."

Well, now the Negro in Mississippi can vote, and the Hispanic in Massachusetts can vote, but sees no reason to vote. Washington is an abstraction, not a reality for these young parents. Their right to vote has been hard won, back in the 60's and 70's before they were born, and freedom riders died for it, but it means nothing much to them now. Voting is something other people do.

On the Trump side, the Phantom imagines, there were likely lots of people like his assistant, for whom voting meant nothing in their lives--until Trump started giving rallies where he sounded just like them, and like the people on Fox News and talk radio. He stirred the smoldering resentful underclasses into life and brought them out to the polls as a sort of after rally party. 

These folks have never watched West Wing. They watch zombie movies, and car chase and explosion movies. They could not say what the three branches of government are, or why the Supreme Court might be important, beyond maybe something to do with abortion. They have read on the internet that metformin causes cancer, and do not know that what that story was about was a batch of contaminated drug made in a single factory which had a carcinogen in it and was recalled. So metformin, the drug, causes cancer. For them, Breibart News, Fox News, CNN and PBS are all the same: They are just news, none more reliable than another. Well, except they have never watched PBS or listened to NPR. 

The Phantom's assistant tried listening to NPR once, at his suggestion, but she said it was boring, all about people who lived in Africa or Europe or South America and she would never go any of those places. Her husband had never been on an airplane and only once had traveled out of New England. 

On the other side, are the clinically depressed college grads who consider Trump an intimate member of their world, who regard him as that horrible frat boy they cannot avoid in the hallway or the cafeteria, who is not in their classes, but who lurks around at the parties every Friday night and gets drunk and smirks and drags off a girl to a bedroom whenever he can. He's an intruder they cannot avoid.

But, of course, they can avoid him. They can avoid him but they can simply not stop obsessing about him. He is not the thug they have to confront; he is simply the thug they cannot ignore.

He brings the rabble out onto the street, but not the streets the West Wing crowd typically frequent. He makes White Power marches by Proud Boys socially acceptable, among those who are so inclined. But there is plenty of denigration of those KKK wannabes.

We'll know, eventually, maybe by the end of this weekend, who the various secretaries of state declare the winner of the election. And then, if it's not Trump, there will be the law suits. If Trump wins, the Democrats will meekly accept it and make brave, inspiring speeches and there will be women's marches with pink knit hats and chatter on Twitter and Facebook and people complaining how vulnerable they feel, and how they feel like crying. 

And then they will have to face the coming storm of the return of COVID19.

This America, man.