Source of book: Borrowed from the library
My two eldest kids took a STEM class at their high school last year, a class which covers a variety of science topics - the teacher likes to give a flavor of interesting stuff each year. In addition to forensic science and physics, there was a unit on medical ethics. The Immortal Life of Henrietta Lacks was the book used for the discussion. It has been on my list, but I figured now would be a great time to read it, so I could talk with my kids about it.
By now, I expect most educated people are familiar with the basic story of Henrietta Lacks. A young mother in her thirties, she was diagnosed with an aggressive form of cervical cancer. As was becoming more common, a piece of that tumor was retained by the doctor, and eventually cultured in a lab. Something about the specifics of the sample made it the first cell culture that was successfully sustained. (Essentially, it was so malignant that it the cells divided - and continue to divide today - without limit.) Henrietta, unfortunately, died of the cancer not too long afterward. (Probably, even today, her prognosis would have been poor. It was a nasty cancer.) Her cells, however, continue to live on today in vast numbers, and have been used for vital research that has led to medical breakthroughs from the polio vaccine on down.
The problem was, neither she nor her family knew at the time that the cells were retained, none of them were ever compensated, and - worst of all - her name and medical information were widely disseminated without her consent.
At the time, all of this was legal.
These days, there have been some changes, particularly when it comes to informed consent and medical privacy. However, the question of “who owns cells removed from my body” is still up in the air, and there are few actual legal protections.
Some of this is just as a matter of pragmatics: since many of the uses of cell samples didn’t even exist when the cells were removed, how can one get “consent” for those uses? Others are a matter of value: individual cell samples almost never end up like Henrietta Lacks’ cells, and are only valuable as an aggregate, so compensating each donor would make the cost prohibitive. And others still are ethical: after all, what is wrong with using something that someone didn’t want and discarded?
This book tells the story of Henrietta Lacks and the HeLa line of cells from the cancer that killed her. It also tells the story of her family - her parents, her children, her descendants. Skloot spent literally years working with the family and exploring the history of the various branches - they agreed to help her with the story for her book, as long as she agreed to tell the whole story, including the good bad and ugly of the family. The result is a delightfully human look at a story that might otherwise have just been an academic look at ethics.
One thing that I remain fascinated with is that the Lacks family seems to have clearly stated the real issues surrounding the case, not just the abstract ones. They are actually thrilled that the cells could do good for others, although the lack of consent bothers them. But they also point out the bigger injustice: large corporations have made significant millions off of the cells, but the Lacks family has suffered for lack of affordable healthcare. And that is a tragedy, not just of that family, but of literally tens of millions of Americans. Our nation, the most wealthy in the history of the world, refuses - REFUSES - to join every other first world nation and provide healthcare along with other infrastructure.
This is intentional. And it is racist. African American families like the Lacks are more likely to be the victims of this injustice.
You can go back in history and see how this happened. In the late 1940s, President Truman tried to get the US to join other first world countries in creating a national healthcare system. The all-white American Medical Association lobbied hard against it, because its members “didn’t want to have to treat negros.” And so, we instead tied healthcare to the jobs held by white males. And we continue to refuse to create a universal system because said white males like their privileges, and are uninterested in paying so that others can have it too. And that is how you end up with a system that costs twice as much while providing grossly unequal care, leading to medical outcomes among our poor more in line with the third world than the first.
As Henrietta’s son Lawrence said, “It’s not fair! She’s the most important person in the world and her family living in poverty. If our mother so important to science, why can’t we get health insurance?”
Yes indeed. Why not?
And that is one of the important questions this book asks. The Lacks are right, of course. In a functional society, we really don’t mind donating things that don’t cost us much and might help a lot of people. I donate blood, and included in that is the consent to let them use a little for research. But what we generally want in return is that society consider us too. Don’t use our genetic information against us. (This has, fortunately, been addressed by legislation.) And in exchange for us seeking the good of humanity, perhaps we can have our health needs addressed as well, rather than letting the benefit accrue to the ultrawealthy (in the form of low or no taxation) and the corporations that do the research.
The book contains a plethora of memorable characters, and not just the Lacks family, which is colorful enough.
For example, there is Alexis Carroll, a French surgeon who claimed to have kept chicken heart cells alive indefinitely. This is doubted now, and the supposed evidence disappeared later. However, there is not doubt that he was beyond eccentric in other ways, and not just for his (then trendy) eugenicist views. He believed light killed cells, and so worked in what the book descries as “the photo negative of a Ku Klux Klan rally, where technicians worked in long black robes, heads covered in black hoods with small slits cut out for their eyes.” And he also had articles in Reader’s Digest with advice to women to never beg their husbands for sex, because it would drain the vitality needed for their minds.
Another colorful character was Dr. Sir Lord Keenan Kester Cofield, a con artist who convinced the Lacks family that he was a lawyer who would win them millions in a lawsuit. I’ve met a few like him, but he seems to have been the Don King of hucksters, the best of the best. The author seems genuinely disappointed that she was unable to locate him for an interview.
There were some unexpected things in the book too. I was not aware that when the HeLa cells proved to be vulnerable to the polio virus, it was the Tuskegee institute that did the initial work of growing vast quantities of the cells. African American scientists created the first cell production facility ever.
Another interesting bit is the family’s history. As with many - indeed most - African American families, there is also a white branch. Because, you know, a little slave raping that assholes like Doug Wilson claim was rare was actually completely “normal” in the antebellum south. In this case, again, as is common, the white branch of the family refuses to acknowledge the black branch. But, in a fun twist, many white relatives were buried in the same unmarked plot as the black ones - and Henrietta. As her cousin Cliff pointed out:
“They spending eternity in the same place,” he told me, laughing. “They must’ve worked out their problems by now!”
There are a number of great lines like that - Henrietta’s kin are delightfully witty. And very human, for good and bad. It takes a long time for Skloot to win their trust - for good reason. But she didn’t just research, she became a part of the story, putting in the time and effort to build relationships.
Just one final thought - I could say so much more, but I think the book stands on its own pretty well. One of the difficulties in medical ethics is that in the absence of bright line rules in the law, it is really difficult to enforce the supposed norms that patients expect. As a lawyer for a doctor accused of bad behavior argued, “If the whole profession is doing it, how can you call it ‘unprofessional behavior’?” That doesn’t excuse it morally, but it does make it difficult to prosecute, which is why legislation really is important in setting the necessary boundaries to what is permitted. The book raises a lot of the questions that need to be asked, but the law has been slow to even consider whether to step in, and how. And that is even before we get to the really heart of the question, which is how to address the central problem of late-stage capitalism, which is how do you return the benefits created by the people back to the people themselves? It is something to think about.
This is a good book, with excellent storytelling, smooth writing, and an author who clearly cares passionately about her topic and the people at its center.