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Non-judgmental Ethics Sunday: Can a Researcher Studying an Alzheimer’s Treatment Try It on Himself?

posted by Joshua on February 12, 2017 in Ethicist, Nonjudgment
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Continuing my series of responses to the New York Times’, The Ethicist, without imposing values, here is my take on today’s post, “Can a Researcher Studying an Alzheimer’s Treatment Try It on Himself?

I’m an older scientist who has spent decades leading a small laboratory at a well-known medical center. Much of our work is purely for the joy of discovery, but we also seek badly needed cures for illnesses. A cure for Alzheimer’s disease is beginning to look attainable with technology we are pioneering. While investigating genes for early-onset Alzheimer’s, we invented a gene-transfer method that stopped the brain damage and restored cognitive function. Eureka! Sadly, my doctor has just given me a diagnosis of early-stage Alzheimer’s. Given that no truly effective treatment is out there yet, can I try dosing myself with our potential cure? Do I have the right, given that I will otherwise die of dementia before a clinical trial could even begin? I plan to do this alone. None of my people will know about it. It’s something like a high-altitude, low-opening jump. It is not reversible and may be dangerous. But is it wrong? Name Withheld

My response: You didn’t ask if it was legal or what medical societies believed about it. You asked if it was wrong. That’s a specific question that’s easy to answer, though it’s not yes or no.

There is no definitive answer about its rightness or wrongness. If there was, you would have looked up the definitive answer and not had to ask a newspaper columnist. The concepts of rightness and wrongness about people’s behavior are people’s opinions. People may feel strongly about their opinion, meaning they think they are right, but others disagree with them who feel they are just as right.

I suggest you ask the consequences of your actions and how they affect others.

The New York Times response:

I’m sorry to hear about your illness. As our diagnostic capacities regarding dementia increase, more and more people face this distressing news. That makes the work you are doing especially important, and I’m glad that you have hopes for the approach that your lab is studying. I can see the temptation you face.

What’s more, the history of medicine is full of cases in which researchers experimented on themselves. Salk gave himself his polio vaccine before it was given to the public. The inventor of Valium tranquilized himself before tranquilizing the multitudes. Barry Marshall, the researcher who identified Helicobacter pylori as a cause of stomach ulcers, gagged down a bacteria-laden broth and studied the results. One reason this practice was permissible — even heroic at times — was that because the subject was the experimenter himself, informed consent wasn’t an issue. There are obvious limits to such “n of 1” case studies — an anecdote isn’t data — but knowledge has sometimes been advanced this way.

Because you are entitled, in my view, to take your own life if you have normal mental competence, you have the right to risk your own life, especially in the interest of improving the quality of your remaining years. And if having subjected yourself to this experimental treatment, you experienced drastic improvement and revealed what you’d done, it’s conceivable that you could help accelerate the process of moving the therapy to clinical trials. (Or not: Early dementia can be episodic, and its progression may lack a fixed course.)

Still, what you’re proposing raises some moral considerations you should weigh carefully. One is that the biological materials and intellectual property involved aren’t yours. You would be stealing them. Perhaps you’ve determined that the loss to their institutional owners would be de minimis. A bigger issue is that you would be breaching your understanding with your employers. And that’s important, because there could be larger risks to them.

What the risks (and therefore the ethical issues) are would depend on how the genes were transferred. If you did it by editing the genes of your own pluripotent stem cells, that would involve no obvious risks to others that I can see. Suppose we were talking about a genetically modified viral vector, however. That would raise biosafety issues: Is it “replication competent” — is there any chance of shedding and spreading? Has a rigorous hazard assessment been done? Once the virus was released from the lab, your employers, as well as you, could be liable for the consequences. At least in theory, there could be an exposure risk to people who, unlike you, aren’t in a position to give informed consent. You’re well placed to assess the probabilities here, but not as well placed as a properly constituted human-subjects review committee.

My mother, who is 89, fell and broke her hip last summer. Before that, she had come somewhat unmoored from reality (confused about what year it was, thinking long-dead relatives were alive, suspecting that people were plotting against her). She had also become incontinent, was unable to dress herself and sometimes needed to be fed.

After her hospitalization for the broken hip and weeks of inpatient rehab and physical therapy, we were told she needed round-the-clock care. The family could not provide it (my father is physically disabled), and there was no money to hire someone to be with her 24 hours a day. We placed her in the dementia ward of a nursing home.

She doesn’t understand why she is in this facility, or that she will not go home. Without assistance, she cannot get in or out of bed, make it from the bed to the bathroom or dress herself. She thinks she is doing all of these things, but in fact she is not.

If we tell her that she is in this facility for the rest of her life, she will forget. Each time we tell her, the shock will be as if she is learning this for the first time.

My question is: When she asks about going home to my father, do we redirect and give vague answers, as we have done thus far? Or do we tell her, even though she won’t remember the answer and will ask again and again, causing her fresh pain each time? Name Withheld

My response: Same answer as the message above. What are the consequences of your actions to the people affected? What other measures do you have? Abstract philosophical ethics?

The New York Times response:

Perhaps medical science will one day alleviate these problems. But for the foreseeable future, many of us will, like your mother, become slowly unmoored from reality as we grow older. That makes a difference as to how we should be treated. You are understandably anguished by the thought of lying to your mother. Someone who has a normal command of her faculties is entitled to the truth; it will help her manage her life in the ways she sees fit. Lying to those with whom we have intimate relationships — as well as keeping important truths from them — is disrespectful, in part because it is disempowering.

But your mother has reached the point where she is not managing her life at all. She doesn’t need to be told the distressing truth because she can’t do anything with it; her response to relearning what’s happening will just be a sequence of painful episodes. The fact that her agency and her comprehension are limited means that what you’re obliged to tell her is limited. Indeed, because the truth will cause her so much pain, you may even have a duty not to share it with her.

In hospitals, doctors are often employed in part-time administrative jobs. To take on those administrative tasks, the doctor will reduce patient-care time. A doctor typically does this sort of work for two to four years as a diversion and to gain a deeper understanding of the health care system. There are typically rather few interested applicants.

My colleagues and I recently became aware that the large hospital system we work with has a policy to adjust the hourly compensation to match that of the doctor’s specialty. This has the effect that a highly compensated surgeon will be paid much more than a pediatrician for the same work. Of course, the surgeon is unlikely to accept an administrative position if it entails a significant pay cut. Yet, given that a doctor with any specialty can do the administrative job and one whose specialty is less remunerative may well have more administrative experience, the policy seems unethical.

Should equal pay for equal work apply, or is this simply a case of supply and demand, in which market forces rule? Name Withheld

My response: If it seems unethical, then why are you asking what principles apply? Your question implies the answer you probably suspect, which is that there is no concrete answer everyone will agree with. There is no absolute measure of what people’s time is worth. Different people have different values, which lead to different opinions of people’s worth. One person may evaluate based on equal pay for equal work. Another may evaluate based on supply and demand. Others both or neither.

My hunch is they pay people what they need to to get the work done by qualified people without paying much more. If they paid less they wouldn’t get the quality they needed. If they paid more, they’d get more than enough people working there and realize they could pay less.

They’re probably open to your influence if you’re skilled at negotiating salaries. If you’re not interested in changing things but could, you sound like you’re implying you accept the situation. If you don’t, why aren’t you doing anything about it?

The New York Times response:

Wages are set in order to get people to do things. If you want people in various specialties to do administrative work, you’re going to have to pay people from highly paid specialties more. So what about the principle of equal pay for equal work?

Like many principles framed in terms of equality, it is really about something else. It’s about the moral idea that we shouldn’t treat people differently on the basis of irrelevant features. Gender, race, sexual orientation, national origin, veteran status and so on shouldn’t count in determining wages — unless they’re relevant. (In other words, there’s nothing wrong with paying veterans more if you need people with combat experience and that’s what it takes.)

Here the specialty isn’t an irrelevant feature, so it’s O.K. to take it into account. Otherwise, as you note, there would be no highly compensated surgeons who had an in-depth understanding of the hospital’s administration. I’m guessing you agree that this would be unfortunate.

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