Arthur Caplan’s reflections on medical ethics draw not only on theory but also on lived experience. As a child hospitalized during the polio era, he watched doctors shield families from harsh truths, promising sick children would “go home” when they clearly would not. That early encounter with paternalism sparked a career questioning who medicine serves, who gets protected, and who gets left behind.
In this episode of Behind the Breakthroughs, Caplan argues that modern bioethics is undergoing a profound transformation. Medicine once viewed disability almost exclusively as a problem to “fix,” often with horrifying consequences. He recalls a time when infants born with conditions like Down syndrome or spina bifida were denied treatment and allowed to die. Today, he warns, the danger is subtler but equally troubling: a culture of genetic testing and parental perfectionism that risks defining human worth by what technology can detect.
Caplan also sees a seismic ethical shift from protection to autonomy. Research ethics once focused on shielding vulnerable people from dangerous experimentation after scandals like Tuskegee and the Willowbrook State School. Now, fueled by post-COVID distrust and libertarian politics, public pressure favors “right to try” medicine and personal choice even when evidence is weak or risks are high.
Yet Caplan draws a sharp line at public health. Vaccines, he argues, are not merely personal decisions but moral obligations rooted in responsibility to others. He warns that an obsession with liberty, detached from community ethics, threatens the foundations of public health itself.
Caplan also looks ahead, discussing what he thinks will define the next ethical frontier, the brain. If we can alter the brain, how much can we change and still remain ourselves?
This interview has been edited for length and clarity.
IPM: How did you become interested in medical ethics?
Caplan: When I was about six, in 1956, I was playing with my parents in their bedroom, rustling around, when they noticed my legs weren’t moving well, and my mother freaked out because she knew that meant maybe polio. It was something that all parents knew about at that time, fearing it was incurable, sometimes fatal, and often disabling.
You didn’t know even what to do to prevent it. People tried to close down swimming pools and not have summer camp, but it wasn’t clear what the route of transmission was. They didn’t understand that it could be in wastewater or fecal material.
Off I went, living in Boston, to Mass General. The experience definitely shaped me in many ways in terms of outlook and career. At the time I didn’t like the fact that the doctors and nurses didn’t tell us the truth. They often said, “Arthur is going to go home,” and Arthur was clearly pretty sick, and he didn’t go home. That’s a long-winded way of explaining the genesis of my interest in medical ethics.
One other thing that was interesting that people forget when a newborn is born with a birth defect when they go into a sort of neonatal peds rotation is if the parents say there’s a birth defect and we don’t want it treated, the doctors do not. That included spina bifida. In fact, it included Down syndrome. Those infants were put in a corner and allowed to die through starvation.
IPM: How is genetic testing changing society’s perception of what constitutes an “acceptable” human being, as well as medicine’s responsibility to treat all humans?
Caplan: The idea that medicine has always had a view that disability is something that you have to treat—I don’t agree with that totally. I would like to see that treated as an open question, not a close one. It’s also clear that aside from medicine’s views of disability, the line shifts technologically; some of the things that are disabling are less so as we get better technology.
At NYU, we do face transplants…but we, interestingly, have not really gotten into limb and hand transplants. The reason is we think that the prosthetic opportunities are so good that there’s no reason to do a procedure and then stay on immunosuppression by transplanting a liver.
Disability is often just seen as something where the cost is literally an economic cost. What’s the burden of the person to take care of them in an institution or to take care of and make accommodations for them? If you have a kneeling bus or a ramp in the library and that sort of stuff, but you don’t get in the economist calculations often enough, just measure what it’s like to have an enjoyable life. Forget about what it costs.
There are many issues around disability that I think the world of genetic testing, even genetic engineering, neglects a little.
Counselors have been taught over the years to be neutral, and we use them frequently, particularly in academic settings. But they’re not neutral. They have a list of conditions that they look for and will counsel you on, and then there’s another broad range of things they don’t say anything about.
That boundary is shifting according to parental expectation. There are plenty of wealthy parents who I think won’t accept anything less than a perfect child. If you tell them their kid has any kind of issue, they may well start over. There are other cultures where you tell them their kid has a club foot or a minor issue, and they’re going to try and cope with it. Culture really shapes how we view. What are we going to diagnose? What are we going to treat in the U.S.?
I fear partly what determines what we’re going to diagnose is what we’ve got to test for, not necessarily whether it’s a bad thing, a good thing, a bearable thing, a cultural thing, whatever. It’s almost like, can I charge for this? Then I’m going to add it to the battery.
IPM: What has been the biggest medical moral shift over your career?
Caplan: Research ethics. When research ethics really got rolling, it was in response not to the Nazi concentration camp experiments, although the idea of informed consent came from those abuses when they were put into the court opinion. The emphasis was on informed consent.
All the way back to the Tuskegee study of the early 70s, people were put in experiments, oftentimes institutionalized Willowbrook demented Jewish chronic disease hospital kids; poorly educated Tuskegee kids in asylums; and the Iowa stuttering experiments, where they tried to figure out if they could teach kids to stutter to understand the genesis of stuttering by stressing them, and all of this culminated in the view that research is too risky and dangerous. People need protection from it.
We had a history of protectionism. It was one of these things where you’d have to be insane or inane to be a research subject. Who would want to do that? Look at what happens. People die and they get mistreated and so forth.
Probably around the time just before COVID, we were seeing a shift. It is part of the shift that is represented by MAGA and MAHA, and that is the rise of a notion of “I want more liberty and I want more ability to make my own choices.”
Today we don’t see people demanding protectionism. What we see is them demanding access. What you’re seeing in policy is more ability to give people the right to try things and more ability to say things to people. It may be very risky, but if you were to do it, we’re going to try and make that possible.
Trump is very proud of his efforts in what’s called the “right to try” space. Many states have enacted laws to try and allow people to do this. You can see special laws here and around the world to give people access to stem cells. The therapy, I think, doesn’t really have much evidence for much of anything except maybe, I don’t know, bone marrow transplants or something. But, but they’re using it for arthritis and down syndrome and autism, and who knows? The justification is “Your choice, your decision.” It’s an interesting shift.
There is a popular push, especially in the U.S., to let people take more risk, to let people take informed risks, and to let them do it. Some of the things we see today. You put them in front of an IRB 25 years ago; there is no way that they happen. Just no way.
IPM: Why have vaccines become so divisive?
Caplan: Vaccines depend upon a moral framework of public health, and public health ethics relies on a duty to your neighbor. It relies on an obligation to the community. It isn’t just about your choice. It isn’t just about freedom. It’s about responsibility. When it comes to vaccination, you have a responsibility to ensure that your neighbor’s newborn, who has no immune system and cannot be infected, or the child who has an immune disease and lacks an immune system or has undergone a transplant, or your grandmother, whose immunity is very weak, does not die from the flu, COVID, or something else.
What bioethics failed to do is articulate public health ethics. That’s what mandates are about—restrictions on liberty. That’s what quarantine is about—restrictions on freedom of movement. If you don’t see a duty to others, you’re not going to go along with any of this.
We have within the MAHA movement a real overemphasis on liberty all the time. The surgeon general of Florida said he was going to do away with all vaccine mandates for kids. That’s a bad ethic for public health. You do it that way, and you’re going to have no problem. You can drive drunk as you want anywhere you want to go and speed all you like.
There are libertarian people who would go for these things. They don’t want any government intrusion. I think it’s wrong. I think Thomas Hobbes would say you’re going to have a life that’s nasty, brutish and short if you don’t have some community ethic around in addition to choice. John Stuart Mill, who was actually a big believer in liberty, said, “Your freedom to swing your arm ends at the tip of my nose.” You can’t harm me by your choices. That’s how I say vaccination is. It’s part of the fact that we’re interconnected, that some things we do will hurt others if we don’t limit them, restrict them, and so on. In emergencies we’d have a giant plague.
Their old argument had always been vaccines aren’t safe. Today it’s about freedom. “I’m not against vaccines,” says RFK Jr. “It’s your choice.” My argument is, “Is that your choice?” If you’re in the middle of an epidemic or a pandemic, it is public health’s duty to get you all vaccinated to make this thing go away. They’re wrapped totally around the liberty and autonomy values framework and very successfully in the current climate.
The way one other group comes in is through a spokesperson, who at this point represents what I’ll call “communitarianism,” which is about caring for one’s neighbor. Ironically, it’s the Pope—both the previous one and the current one—who speaks out about AI, while the previous one focused on encouraging people to feel duties and obligations toward the weak, the poor, the vulnerable, and migrants and immigrants. Religion was ironically seen as the enemy of medicine. Now it’s providing the moral foundation and is one of the few places doing it for public health interventions.
I don’t think the public gets what public health requires, what it needs, and why it obliges them to do things they don’t normally want to do, which—okay, I understand that I didn’t like being locked in my house either, but that’s been a fear.
One other one is what I’m going to call these eugenics claims. They keep floating around that certain races are inferior or Mexicans are bringing us disease, or there are countries that are “[expletive] countries,” as the President has said, or even some of our tech bro people like Musk insisting that we have to keep an eye on breeding better children so that AI doesn’t overtake us and so on. There is really bad science behind eugenics, and I worry about it being all over the place.
IPM: What will become a hot moral battleground in the future?
Caplan: Everybody expects that the next 10, 20 years will be AI and its incorporation into healthcare, but I don’t think so. Weirdly, incorporating AI stuff into healthcare is, I think, on the whole, pretty useful. It lets you handle a lot of data, get information quickly, and reduces errors. AI skinning or AI surgery or whatever can do certain things better than the human eye or hand.
It’s not that there are no issues. It could turn out to be a huge problem as to whether we can believe any information on the internet or anything anybody posts; that’s a problem, but not within healthcare. I’m going to say “neuroscience,” and I’m going to say “modification of the brain.”
We are learning quite a bit about how the brain works, and right now we are still in the early stages of using needles to control parkinsonism, obsessive-compulsive disorder, or even obesity. That area is going to expand rapidly, raising many questions about how much you can change the brain and still be you, and about the reversibility of some of these changes.
IPM: How will history look back on this period of medical ethics?
Caplan: I think this period will be seen as the dark ages, where science was scrubbed. People were fired for legitimate work, not political reasons. That our history was rewritten to remove important examples of racism in science and medicine. Misogyny. I think we’re in a really miserable period of anti-intellectualism, again, partly spun out of COVID and its disappointments and frustrations. I do think we’re in bad times.
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