I'm heartened by the discussions of medical ethics arising out of The Immortal Life of Henrietta Lacks. From reading and listening to interviews with writer Rebecca Skloot, and from my brief conversations with her, I know that medical ethics were very much on her mind during the ten years it took her to create the book. If you read the book, you will see that she was also very concerned that she not be just another exploiter of the Lacks family. That's one reason comments such as this one are disturbing----and at the same time not really disturbing at all. It helps to highlight the amount of distrust the scientific community has managed to bank.
(As a reminder, Henrietta Lacks was an African American woman who died of cervical cancer in the 1950s and whose cancer cells, taken without her explicit consent, became one of the most important tools of modern biology.)
We've all benefited from research made possible by Henrietta Lacks and countless others whose names have been forgotten. The amount of distrust we've banked with the public over the years is considerable, and will take a long time to mitigate. But there are many reasons to try to improve our trust balance sheet, not the least of which is our own self-interest.
But let's back up a bit and get a little deeper into how we understand medical ethics.
Ethics are a way of understanding our behavior toward each other. It's not a set of rules which one can simply check off and get an "I'm Ethical!" sticker. And ethics change as our values as a society change. Like many things in society, what is considered ethical is often a matter of perspective, with wealth and privilege often creating a certain set of assumptions (or creating blinders), but one of the goals of ethics is to create ways of relating to each other that take into account "the other". Ethics that are determined by or benefit only one group are not very useful.
Henrietta Lacks was treated at a time when medical ethics were quite different. Certain values were already important, including patient confidentiality, but were understood much differently then now, and applied differently to different groups. Our modern understanding of the balance between patient autonomy and medical paternalism has shifted considerably. Not many decades ago, it was assumed that the doctor knew what was best for the patient, and the patient not only did not participate in decision making but was often not given significant information about their condition.
In practice this is a very difficult balance to strike. No patient can have the same perspective as the physician (and vice versa). The most medically knowledgeable patient, thrown into the sick role, may have somewhat impaired judgement. People come to physicians because we are experts and they want our opinion (at least under the best of circumstances). While we shouldn't make decisions for our patients, we must judge how much guidance they want and how much they need, and help them make decisions that benefit them. This should be done ideally with the thought of the patient's autonomy explicit in the thinking of the doctor.
In the case of Henrietta Lacks, her autonomy was violated, at least by modern definitions. She had little choice as to where she sought care (because of both economics and racism), and her care was delivered with little input from her. She was not well-educated, and communicating to her the details of her care would have taken a lot of work---work which would have benefited her. The cancer cells which went on to become the HeLa cell culture were not simply a by-product of her treatment. They were not leftover from surgery meant to help her. They were specimens taken explicitly (to the doctors) for research, and this should have been communicated to her. She should have been given the option of declining the procedure. (See here for a discussion of the consent given by Mrs. Lacks.)
When helping guide people through important health decisions we must keep in mind our goals. Explicit in modern medical ethics are the goals of beneficence and non-maleficence, that is, helping the patient and trying not to harm them. These goals, and that of autonomy, are often in conflict. In attempting to help a patient heal and prevent their death, we may recommend a certain behavior, for example, a pill. Even when the patient clearly understands the risks and benefits of the medication, they may still decline it, and because we value patient autonomy, we accept this. We usually accept it even though we perceive it as interfering with beneficence. But the principle of autonomy may demand that we allow patients to determine for themselves what they consider helpful, and no matter how crazy it may seem to doctors, a patient may decline a treatment we consider necessary.
Unless we choose to injure their autonomy. In the case of Henrietta Lacks, the doctors undoubtedly felt they were acting to help her, and the researches felt they were acting to help humankind. But Lacks and her family did not feel the same way. The ways in which the doctors and society as a whole dealt with Henrietta and the rest of the Lacks family failed to advance their dignity, and failed to provide them with justice, two more modern medical ethics.
Those who argue that this is all moot would be wise to keep their own self-interest in mind. Jeremy Singer-Vine discusses this at Slate.com, concluding:
Consent ultimately speeds us toward discovery and cures by boosting scientific trust within the communities that those researchers not only serve but also depend upon.
The fact that Lacks died a horrible death may or may not have been mitigated by more ethical behavior. But the suffering of her family certainly would have. This is where ethics can also get a bit difficult.
Understanding autonomy, beneficence, etc. requires attempting to understand another person's perspective. This is very, very difficult for many. A comment from Ed Yong's blog brings up one of these problems (and is typical from what I've seen on the web):
Paying people for blood/tissue donations is a bad precedent to set, most people are happy with the knowledge that they've helped medical research. And lets not forget that had she refused permission for her cells to be used then research would have been delayed but someone elses cells would have been cultured and we wouldn't be having this conversation. (Emphasis mine, PAL)
What "most people" would be happy with is an interesting assumption, one which may or may not be true, but what is important in medicine is not just what "most people" want, but what the person sitting in front of you wants. While society's needs may have been served by Mrs. Lacks, they were not served in a way that preserved her dignity and autonomy. Not only is a utilitarian argument ethically unpleasant, it's invalid, as the cells and subsequent discoveries did not depend on abusing Mrs. Lacks.
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While I find the story interesting from an historic perspective, it is, in my opinion, of little relevance for today. For once, the legal question of ownership to tissue samples is settled. Secondly, everyone realizes that while this is not acceptable in 2010, it was common (in most groups of society, not limited to poor uneducated blacks) that decisions were made based on "the doctor is right", not on "what would you like to have done".
The mentality of today that every perceived evil no matter how long ago makes you a victim isn't applicable in retrospect to the 1950s. If you'd asked a civil rights protester at that time to list the 10 most important things to change, I'm pretty sure "taking of cell samples under rubber stamp consent" wouldn't come up.
Thank you for this post! I'm looking forward to reading the book.
Who knows -- maybe if Henrietta Lacks had been asked for a sample of her cells to use in research, she would have said yes. (Incidentally, this made me think of this recent article: http://www.theglobeandmail.com/life/health/time-to-end-pelvic-exams-don… I'm not sure how widespread the practice of doing pelvic exams under anaesthetic without consent really is, but the article brings up some really important points about consent and autonomy.)
@1: The mentality of today that every perceived evil no matter how long ago makes you a victim isn't applicable in retrospect to the 1950s. If you'd asked a civil rights protester at that time to list the 10 most important things to change, I'm pretty sure "taking of cell samples under rubber stamp consent" wouldn't come up.
Oh well, that makes it totally fine, then. I guess there's nothing we can learn from this story after all. Way to completely miss the point there.
Mu--
"Taking of cell samples under rubber stamp consent" wouldn't have been on the list, but "decent medical care" might well have, where "decent" includes both access to basic care, and having doctors and nurses treat you like a human being and an adult. It's still on people's lists, because equal access to medical care is not a solved problem. Black Americans are less likely than whites to get to see a doctor, and less likely to get aggressive treatment for certain diseases if they do get to a doctor. Whatever people may say, and even believe, about their behavior, many non-Black doctors do think a Black person's life and health are worth less than a white person's, in the sense that less time and money will be spent trying to preserve them.
There is a difference between "the doctor is right" when the doctor and patient agree that the doctor's goal is to save the patient's life, and that same phrase when the doctor may be thinking that if they can send this patient home, the bed will be available for someone they consider more worthy.
Also, nNot one of the ten worst things that happened to most black Americans in the 1950s" isn't a very high standard. And it's not one that most of us would accept in our own lives, even revised for 2010: make a list of the ten worst things that happen to you in the course of a year. Now, are you prepared not to complain about or object to anything not on the list? That includes any bad thing that you hadn't even considered until it happened. For example, most people won't have "the murder of a close relative" on the list. If that happens to them three months after they're asked to make the list, they aren't going to dismiss it as irrelevant. Nor should someone have to suddenly ignore a real problem because a worse one occurs. Focus elsewhere, yes, but not tell someone who is hurting or oppressing them "it's okay that you're stealing from my paycheck, because at least you didn't rape my child, and it's not as bad as my asthma."
I love my readers, really. I was at first disturbed that many of my regular readers don't seem to get what some of the ethical problems are in the Lacks case, but a friend pointed out to me that this is actually an advantage, a chance at reaching out. Therefore I will try to be kind.
I thought Vicki handled the issue pretty well. Mu, whose comments I generally find useful, missed it on this one---i think s/he has a common problem: that of not being able to place oneself in someone else's position.
I don't think anyone is trying to "create a class of victims" or some such thing, or even arguing that profit from cell cultures should go to the originating organism/human.
But transparency goes a long way in creating good ethics. I'm also pretty sure that we shouldn't limit what we call ethical behavior to 10 deadly ethical sins, or some such. Ethics evolve, and with good reason. We can learn from our previous mistakes, from our behaviors that have harmed others.
And if you don't think our society harmed the Lacks family, read the book, then come back to discuss.
Unrelated--feel free not to post here, but important.
Dear Pal, please help nail "Dr." Oz's a** to the wall:
http://www.huffingtonpost.com/dr-mehmet-oz/its-not-just-a-little-sug_b_…
Sanity from a REAL doctor is badly needed!
PAL, I do see the ethic problem, but to me it's of merely academic value, and that only if looked at from today's "absolute morality" point of view. I'm more of a "that's the facts, live with them" guy, not trying to apply today's standards to historic events.
Case in point, in 1990, the German reunification was only allowed to proceed by the Germans signing off on the ethnic cleansing of Germans from the eastern part of Germany after the war. But we're now prosecuting Serbs and Croats for doing the same thing in their states at the time. We approve a past behavior that we consider unacceptable in our time.
I don't think I understand, Mu, so I may need your help.
I do not understand our current ethics to be absolute in any way. I don't see the problem to be moot, as similar problems arise every day. In my profession, at least, there is nothing moot about this, and if you were to ask the Lacks family I doubt they would find the question moot.
PAL, my "moot" is in reference to "should we do something about what happened 60 years ago now". We already acknowledge that the process at the time was flawed, and we have better processes in place. We also know that there's no legal recourse to be had in regards to potential money to the family. We've learned the lesson, we keep the lesson alive in our history, but the current commotion on the subject seems to be politically motivated without actually contributing anything new.
My "absolute morality" refers to a change in view that happened over the last 50 years in regards to certain moral standpoints. Today, we see racial discrimination as "always wrong", something that wasn't the case in society in the 50s. But we try to apply our current morality to a sixty year old case nevertheless.
If you want a current example of a similar problem, gay rights. One faction declares gay rights a "human right", the other considers sexual orientation not a protected class worthy of protection. 50 years from now, it might well be added to those absolutes, and people will wonder "how could they".
I haven't gotten the book yet but heard the interview with the author on Fresh Air - very moving and thought-provoking. The interview made me think about the gulf in understanding between Henriettaâs family (after her death) and the scientists and doctors with whom they interacted. One side didnât know what questions to ask; the other side was not motivated to ensure that the family understood what was going on. As medicine and science become increasingly more complex, in the absence of the right kind of two-sided communication, this gulf persists. Fear and mistrust (and denialism) fill it. Thatâs another lesson I think we can draw from this story.
In 1968 the US government sent me a letter informing me that they planned to take, not just a few cells of my body, but my whole body. They were also going to take my free will and moral judgement, ordering me to kill people I had no desire to kill, if I wasn't killed myself before then. I would not be given a chance to withhold my consent, informed or otherwise. As compensation, I would be paid a salary about half my previous income. At this time, a majority of the American people thought this was fine; I must sacrifice for the common good (even though the "good" produced was the debacle known as the Viet Nam War). So you can understand that the idea that someone might take without consent a few of my cells, or anyone else's cells, doesn't bother me at all. Ms. Lacks was indeed treated badly by society, but I would say the taking of her cells was quite literally the least of her problems; de minimus, I believe a lawyer would say. The idea that it would have been alright to send me to war against my will, but not alright to take a few cells without permission, seems quite absurd to me.