On the Learn for Life Podcast: Bioethics Academic Director Dr. Robert Klitzman

Jason Wingard (00:00):

If you could, would you choose the sex of your baby or it's eye color? What about ensuring it won't get a lethal disease in the future? Up until recently, choosing a child's name was one of the most significant decisions a new parent could make. But now we're approaching an era where parents have a new set of decisions to make upon the arrival of their newborn. Genetic modification has one of the many ethical issues medical professionals are grappling with in the 21st century.

Bob (00:50):

We have these technologies for editing genes and we now are increasingly learning about different genes that we could potentially edit. So this creates a situation in which increasingly over time I think there are going to be parents who will be editing the genes of their children.

Jason (01:07):

For professionals in this space, doctors, lawyers, scientists, and medical professionals, black and white answers often don't exist and many times laws don't exist yet either. With me to discuss this fascinating world of bioethics is Dr. Bob Klitzman, professor of psychiatry at the Columbia University Medical Center and academic director of the Bioethics Program here at Columbia University School of Professional Studies. Welcome Bob.

Bob (01:31):

Great to be here, Jason.

Jason (01:32):

Let's start by talking about a trip you and I took several years ago to China. We met with government officials from the general administration of sport and we learned about nationwide efforts to recruit young Chinese children to master Olympic level sports potentially involving genetic modification to achieve that goal.

Jason (01:51):

My response at the time was if you remember, I can't believe this is even possible. I imagine others that you speak to on this topic have a similar reaction. You wrote a book called designing babies. What are some of the considerations that parents, law makers, medical professionals and sports professionals should take into account?

Bob (02:10):

Well, these are great questions, Jason, and increasingly important ones, and we have several new technologies that are rapidly advancing that are involved in the kind of scenarios that we saw and talked about in China and that continue to be important today. First of all, we are increasingly being able to identify genes that are associated with various traits and diseases. So we have genes that are associated with breast cancer, for instance, with Huntington's disease, with various other diseases. And we are also increasingly finding genes that are associated with height, with eye color, with hair color, and also with certain athletic abilities.

Bob (02:50):

If you look at Olympic athletes, certain genes that are more common among sprinters and certain other genes that are more common among long distance runners, and there are companies that are now offering tests like this to parents saying you can test your child, little Johnny, to see if he has the gene that's going to make him be a better sprinter or a better long distance runner. And of course over time we're going to find more and more genes that are associated with things like intelligence, homosexuality, musical ability. Perfect pitch. We're finding certain genes, et cetera.

Bob (03:25):

Now already we have certain technologies. We have a technology called pre implantation genetic diagnosis or PGD and what we do there is when we have an embryo, when sperm meets egg and makes an embryo, that's one cell, and then two, and four, then eight cells, and 16, 30, to eventually one of us. We could take out two or three of the cells and we can diagnose it. Actually, it was in China just last year that the first children appear to have been born whose genes were edited as embryos.

Bob (03:55): 

There were men in China who had HIV who wanted to have children and so he made an embryo from the father's sperm and the mother's egg and he then took out a gene called CCR5 that increases the likelihood of HIV getting into a cell. He then produced these children. The problem is that this one gene, CCR5, if it's not there, HIV has less of a chance of getting into a cell, but influenza has more of a chance of getting into the cell and certain other diseases have more risk of getting into the cell. And we don't know the longterm effects of having that gene knocked out in the adult as he or she gets older. Plus it seems that he wasn't as precise as he could have been in just taking out that one gene and not taking out other bits of DNA, as I said.

Bob (04:43):

So these are the kinds of dilemmas that we're facing in that we have these technologies, I think that especially in the United States, these technologies have not been very regulated. And so I would predict that these will soon be available at an IVF clinic near you.

Jason (04:58):

So Bob, I can imagine that these dilemmas that you speak about create quite a healthy debate in your classroom. So beyond the science, do students ever get stuck on the moral conflict that these questions and dilemmas present?

Bob (05:12):

Yeah. So what we do in bioethics is train our students to have critical skills, thinking skills and frameworks for solving these kinds of problems. In other words, we in bioethics emphasize that there are certain basic ethical principles and there are not that many of them, but the art is in knowing how to interpret and apply them. So for instance, autonomy, people's rights to their own body, is an important principle where we don't want to be going in and operating on you against your will or doing things to you against your will.

Bob (05:41):

Then there's the principle of beneficence trying to do good, which is what we as doctors and healthcare professionals and hopefully others in society are doing. Then there's the notion of reducing risks, and there's a notion of social justice that we don't want to be increasing the gap between the haves and the have nots. So it's important bioethics in any problem, let's say the problem is we have these technologies who should have access to them or what should we use them or not? We need to think what are the risks, what are the benefits? Who has rights here?

Bob (06:12):

So on the one hand the parents may have a right to say, "I want this technology, here is 50,000 or $10,000, give it to me." Do the doctors ever have a right to say, "You know what, this doesn't make sense. I feel uncomfortable doing this. It's too much like eugenics," and what are the rights of the unborn child?

What if the child, the parents spent a lot of money to design a kid or choose a kid for certain traits and the kid doesn't want any part of it. Let's say you find out that your son has the gene to be a sprinter and you kind of push him to be a sprinter and he says, "You know, I'm not interested in being a sprinter. I'm not interested in sports," or whatever it is. So there are questions about who has rights here, what the risks are, what the benefits are and what the issues of justice are.

Bob (06:54):

Of course these technologies are expensive, and that's a problem, a concern that many of us have, is that in the future wealthy people will be able to say screen out genes for breast cancer. And poor people won't be able to do that. And so certain diseases like breast cancer, which increasingly there'll be diseases of poor people and that means there may be less resources given to treatment or to research on them, et cetera.

Jason (07:17):

So as you speak about the advances in technology and these issues that scientists are grappling with, it's clear that this is a fascinating and interdisciplinary field. The question I'm often asked, and I know you are often asked as well is well who studies bioethics? So what kinds of individuals come to the Columbia University School of Professional Studies to study bioethics and who's enrolling in the program that you're leading?

Bob (07:43):

Well we have a wide diversity of students, so on the one hand we have a number of physicians, people who are in clinical practice and face these issues all the time and don't have a framework or way of thinking or training to solve these problems. Unfortunately, medical school still has very little teaching in ethics or in decision making and problem solving about these kinds of dilemmas. One physician, for instance, was from Europe and she said that in her area, in her district, there were only four ICU beds, only four intensive care unit beds, so every day she had to make a decision which four patients in the hospital deserve the ICU bed. Would it be the person who's the VIP? Would it be the person who is young but going to die anyway or young but may live the longest? Should she not have old people who may die anyway? How do you think about this?

Bob (08:34):

We also people who often they've had a personal experience dealing with these issues. They've had a loved one and they've had to decide should we pull the plug and they've realized how hard these issues are and they decided that they would like to devote themselves as much as they can to hoping other people address these issues. We have people who work in hospitals now for research ethics committees, which are IRBs or institutional review boards as we often call them, who when researchers say, "Gee, I have this new treatment, I'm going to try it out on my patients," they're the ones that say, "Wait a second, what is it? And has it been tried on anyone or on any animals and what were the results?"

Bob (09:11):

And because it's interdisciplinary, we're fortunate that here at Columbia we have students who are able to take courses in our program in the law school, the business school, arts and sciences, school public health, work with faculty in the medical school. So we have young people who are also figuring this out, where to go.

Bob (09:28):

So the bottom line is we have a wide range of students and we have students from all over the world. We have an online only master's programs. So we have doctors and students from undergrad, recent undergrads who are premed, to physicians who are in Hong Kong and South Africa, who are in Europe, Canada, Hawaii, Texas, California, you name it.

Jason (09:48):

So there certainly is a lot of variability in how students come into the program. The natural next question then is how did you come into studying and teaching the field of bioethics?

Bob (10:00):

So I trained as a psychiatrist and I remember when I was a medical resident, the first day was given a list of patients to see, and I went in to meet with the first woman and she was having breakfast and talking about how the grapefruit wasn't fresh, and we had a nice conversation and I went out in the hall and my resident, my superior, saw me and said, "What have you done so far?" And I said, "Well, I spoke to Mrs. So-and-so." He said, "She's dead. Don't waste your time with the dead." I said, "What do you mean she's dead? I just spoke with her." He said, "She's dead. Don't waste your time with her." I said, "What are you talking about?" I thought maybe there's two patients with the same name. What dawned on me, what he was saying was she had Metastatic Cancer and was quote, do not resuscitate. And so he was saying, "She's dead. Don't waste your time with her." And I was appalled by that. Here she was sitting up talking, having a conversation as fully as you and I are now having a conversation.

Jason (10:53):

But as part of the rotation, she was soon to be dead.

Bob (10:55):

She was soon to be dead, so don't even waste your time with her. I thought that just, my heart stopped. I just, it sent a chill through me. And then in the intern resident room, there was a chalkboard and we would write the person's name, we would write fast code, slow code, no code. We'd erase it and change it. And I thought, who am I to be making these decisions on what we're going to do if someone has a heart attack?

I had no training in how to think about these issues. So I got interested in how we deal with death and dying issues like why we're doing this. Interestingly, I had spent a previous year in Papua New Guinea, living in a stone age tribe studying a disease called Kuru, which was the same as mad cow disease, but was spread by cannibalistic rituals in this tribe. When someone died, their loved ones, particularly women who had no other meat in their diet would eat the person. One woman said, "This way there's always a part of my mother inside of me," but the people believe the disease was caused by sorcery, could be cured by sorcery. And I would say, "No, no, no, this disease is caused by a little thing, like an insect." And they'd say, "Well show it to us." And I said, "Well it's too small to see in your special machine."

Bob (11:58):

And they go, "Oh, what does it look like?" And I'd say, "We don't know," and they'd say, "Well, have you seen it?" I'd say, "No," because it hadn't been identified. And they'd say, "That's just magic." And they believe their sorcerer would take something that belongs to you, like clothes or even food scraps and wrap it around a stone and bury it, and cast a spell on it. And they'd dig up stones and say, "See this stone, this is the stone that killed my mother."

Bob (12:18):

The disease killed up to 90% of the women in certain areas. And anyone who had a headache, they thought had the disease and they would cure them. So I got very interested in what do we in medicine call the disease? What do we call the treatment? How do we know that something's worked? What evidence are we using? And so that's partly why when I then had the resident saying, "She's dead, don't waste your time with the dead," it made me realize the need to question what we do in medicine. Just because a company says, "Here's a great drug for you. It's costs $1 million a year, take it. It's the best thing," to think carefully. Is this the best thing? What do we mean by this? Best thing for whom? And to think critically about these issues.

Jason (12:55):

So you were recently quoted in a CNN article you wrote about designer babies and what you said was quote, "With racism and economic divides prevalent in our society, we need to be better prepared for these ongoing technological advances that are changing generations of people and our species as a whole," end quote. Are there other medical advances you believe could lead to greater social inequality?

Bob (13:19):

As I mentioned, we now have certain drugs that are literally one or $2 million a person in cost. Well, most people can't afford this and a lot of people have insurance, but it only covers say 80% of the drugs. And so increasingly it's great we have great technologies and new technologies, but I'm very concerned that a lot of the costs, even though the initial research was funded by taxpayer dollars for the NIH, the costs of these drugs is going through the roof.

Bob (13:45):

We unfortunately I think have a widening gap between the haves and the have nots in this country, and I'm concerned that that's going to continue to grow, and that a certain amount of healthcare should be a basic right or human right that everyone should be entitled to have access to. Unfortunately, the Affordable Care Act that President Obama put into place, that many of us think is not perfect but was a great step forward, and unfortunately has been under attack from Republicans, in that evidence is showing has been improving health, but is under attack.

I'm concerned that there are high costs to a lot of technologies because a lot of companies see this as a way to make a lot of money, and yet at the same time we need to realize that there are certain goods in our society that are a human right, that are basic right from the Constitution, the Declaration of Independence, that people have a right to life, liberty, pursuit of happiness. There's a fire in your house or a burglar breaks into your house and you call the police. You don't expect the police to say, "Well give us your credit card information first. And if you don't have a enough money on your credit card, we're not going to come and send a policeman to help you." There are certain things that we believe everyone has access because it's good for society as a whole. And yet there are increasingly given large costs of technology, things that are increasingly unfortunately available to some, but not everybody. These are concerns that I have.

Jason (15:02):

So when you talk about these drugs costing several hundred thousand dollars up to $1 million, in some case that hardly seems scalable. So aside from the NIH and other government funded organizations who's paying for the development of these very expensive drugs, and how, from a business model standpoint, could that possibly be scalable when very, very few people are going to be taking these drugs?

Bob (15:26):

A lot of these drugs are for so-called orphan diseases. What happened is there are diseases that lots of people get, diabetes, hypertension, heart attacks, and then there are rare diseases. So a number of years ago the government said that they would fund, put a lot of money into developing treatments for these rare diseases. So treatments that research paid off and these companies are now coming up with treatments based on that NIH initial funding. And these companies say, "Look, there's only 5000 people with this disease and we have to spend hundreds of millions of dollars to develop the treatment, so we need to charge $1 million." And there's no other treatment for some of these diseases.

Bob (16:01):

Many of us are concerned that that's still taking advantage of the situation. What these companies say is, "Look, if this is the drug that's going to save your life, your life's worth a million or $2 million, isn't it? So we're going to charge a million or $2 million," and I'm not sure that that should be the grounds for deciding how much drugs should cost. People have other expenses in their lives and as you say, the pot of healthcare money is only so big. So if a drug is going to be $100,000 a person, like for Hepatitis, the drugs, Hepatitis C, the drugs are 68,000, $80,000 a person. There's lots of people in this country with Hepatitis C and so you're right, that's not sustainable in the sense that that could bankrupt the healthcare system.

Bob (16:43):

But that's not what these companies are thinking. We don't, because we don't have a national healthcare system, there is no meeting between the left hand and the right hand. So if a drug company charges X, Medicare, Medicaid often have to pay that. They can't say, "Well no, we're not going to pay that." Other countries can do that. So other countries often bargain. So we pay more for drugs than a lot of other countries do because other countries say to certain drug companies, "Well, we'll buy your drug, but we're only going to pay you this amount." But we have, we're a country of 70 million people, so you're going to be making a lot of money on that. So I think Congress has built in limitations on the bargaining power that often is there with drug companies. I think we need to address that.

Jason (17:26):

So I want to turn to a topic I know has touched your life personally. Your father was 79 when he died of Leukemia and in the year before his death when he was receiving chemotherapy treatment, he said to you, "If this is what life is going to be like, I don't want it." You've written and talked about this experience and how it raised questions about the terminally ill's right to die. Citizens throughout the world are taught not to kill others, as we know. Laws are actually in place to prevent it, but we are seeing some countries change their laws to legalize physician assisted death. Bob, how's the medical community, which is trained to help patients as much as possible, responding to laws allowing doctors to help patients die?

Bob (18:06):

The issue again is technology has changed the situation. I guess I'd say if I had to say what bioethics is, it's really look at the ethical, legal, and social implications of advances in technology in healthcare and elsewhere.

Bob (18:19):

So what's happened is when the Hippocratic Oath was written, there wasn't much that could be done for patients and many patients would die quote, naturally, there weren't many effective treatments, and it was said that you shouldn't quote put to death a patient, that that was not something, you shouldn't help a patient die. Now, however, we have technologies that could keep someone's heart beating and keep their lungs pumping oxygen in and out even when they're brain dead. Similarly, we have people who we have kept alive, but they have a horrible quality of life. So my father had Cancer, he had unremitting nausea. He was just nauseous 24/7, nothing could treat him. He had Cancer, tried the chemotherapy, it made it worse. And he said, to point at what you said, "If this is what life is, it's not worth living to me."

Now I was astonished, because I as a young doctor at the time thought we have to help everybody. But in the end there was no treatment for him. We see a lot of hype, medicine has done miracles, but we're not God. We can't always do a miracle for everyone and keep them alive. At some point some people are in unremitting pain. We've gotten them to a point where we've extended the quantity of life but not the quality of life. And the quality of life has gone down to be a point that's unacceptable to them. And at that point, I think it's fair to consider what are we doing? And if the patient says, "Gee, I have lived a great life." Some patients say, "I'm 102. I'm in constant pain. I'm in constant nausea. I've had enough." That at a certain point I think it's fair to realize that that person has rights to what happens to their own body, and they say, "Put me to sleep," that that's something we should at least consider.

Now a lot of us feel horror at that, and a yuck response, and if I hadn't seen it in my own father, I would have thought, well that patient's just depressed and we can treat that and give them antidepressant and make something better. But I think that increasingly we need to at least consider the possibility that more aggressive treatment is not the answer. Now with physician assisted suicide or physician assisted death, it's very important that an alternative be palliative care. That is to say that we need to have available for everyone, which is not always the case now, that you can opt, "You know what? I don't want aggressive treatment. I want so-called comfort care. Just make me comfortable." And I think that's what should be offered first.

If patients are offered comfort care and they say, "You know what? Even with comfort care, my quality of life is still not comfortable. I'm still miserable all of the time. There's no end in sight. I'm never going to be able to do X, Y, Z and everything else in my life that I want," then I think a person, I think that it's worth considering the possibility of physician aid in dying. Certain criteria need to be met. This needs to be something where someone's going to die in a few months anyway. We know that. They need to say, make that statement over several months, not just it's Monday morning, I don't feel like this, screw this. But you know, over several months consistently, yes, this is not just a fleeting thing, they need to be seen by a psychiatrist. This is not just depression that could be treated. In those kinds of situations, I think that it's worth considering and there are now about eight states in the U.S. that allow that.

Jason (21:32):

So it's interesting you mentioned the Hippocratic Oath that doctors take, and another part of that oath is that doctors promise to first do no harm. And so in the future, the issue might ask us to rethink what harm actually means and you're speaking to that.

Bob (21:48):

Yes, correct. Yes. And I should say, this gets back to when we talk about, as I said, one of the principles in medicine is a reduced risk. What do we mean by risk? How much risk? Is it the probability of risk, the likelihood of risk, the amount of risk? I mean you watch these ads on TV for drugs, see a couple of walking off in the sunset having a wonderful time and they list the side effects, may cause death. So there are risks and we need to figure out how to take those into account.

Bob (22:13):

And the Hippocratic oath also says you should not perform abortions. So in certain cases we realize that things have changed. I'm sure if you underwent an abortion in 500 BC, before there was antiseptic methods, there was a high chance that you might die, whereas that's not the case now. So there are things that we need to periodically revisit and reassess, and technologies change, society changes, and it's worth rethinking our these concepts rather than just taking for granted this is what we've done, this is what we always do, et cetera.

Jason (22:47):

So let's continue on this trend of looking into the future. How will the skillset of medical professionals change in your opinion in the next 10 years or the next 50 years even?

Bob (22:56):

Technology is going to increase and that leads to many benefits. But also as we've been talking, many potential risks and downsides. The costs continue to go up. And of course that means that if we only have a limited pot of funds, not everyone's going to be able to get it. We have to make these tough decisions, so we need to have trained physicians and lawyers, healthcare providers, public health people. I should say we also have people in philosophy, anthropology, sociology, to think through these kinds of problems, to weigh these issues, to understand the science and the law, but also the ethics, the social issues and implications.

Bob (23:34):

Also, importantly, is educating other providers, educating patients, and educating the public. And so we also work hard to train our students to be able to understand the perspectives of the different stakeholders in the room. People from industry, people from hospitals, patient's perspectives, perspectives of different communities who've had different experiences with healthcare, perspectives of people in other countries in the world.

Bob (23:58):

And also to write about these issues. So we have a wonderful student run journal, Voices in Bioethics that got 60,000 hits in its first few months. We have people from all over the world writing for it, and students from all over the world, and junior professors from all over the world editing for it. I've thought that educating the public through the media is also important and we train our students. We have wonderful courses in journalism in bioethics, for instance, to encourage our students to write about these issues both for medical audiences but for the general public as well.

Jason (24:30):

Well I'm actually glad that you're here to guide the talent of the future through the bioethics discipline. I have one last question. I know you've traveled the world and you've faced and experienced lots of ethical dilemmas, from sports in China to rituals in Papua New Guinea, but what ethical question keeps you up at night?

Bob (24:49):

Firstly, I'm concerned about the growing gap between the haves and the have nots in healthcare, that we increasingly have wonderful technologies that can help people, but they can't, they're not helping everyone because of limited resources. They're going disproportionately to some people rather than other people, wealthy countries rather than poor countries. And within wealthy countries like the United States are going to wealthier people and not poor people. There'll always be some differentiation. Not everyone's going to earn the same exact amount of money, but we need to at least try to make sure that the gap doesn't get worse than it is.

Bob (25:23):

Secondly, relatedly, I'm concerned about climate change, which I see also was a bioethical issue. We have advances in technology that have certain benefits. We can all have cars that drive all over the place, but there are harms, there's global warming for instance. And we need to figure out how to weigh those, how to decide who was a right to continue to engage in activities that are going to worsen climate change and who has the right to say, "No, we need to put limits on that," and how do we do that as a society, and as individuals, and what are our roles as individuals in that process? These are deeply complicated but important questions.

So I think those are kinds of questions that are important looking toward the future. I think that we try to get our students to think about these issues. I think we do to a certain degree, and I think that these are areas that clearly involve all of us going forward.

Jason (26:14): 

Well, if that's what keeps you up at night, you must never sleep. Thank you very much for joining me. We've learned a lot. There are several key takeaways, so let me summarize and keep me honest, if you will. First thing is ethical considerations are increasingly important in deciding how we as individuals and societies should proceed in the world. How to weigh risks and benefits of advances in technologies that affect human health, how to best solve these problems. So you talked a lot about that.

Jason (26:40):

Number two, we need to train current and future workers to consider, address, and solve these ethical challenges. And number three, we need to enhance public understanding of these issues. We work with our students and we need to continue doing so to provide them with skills to write and speak about these topics and various forms to make them as big an impact as we can. Do I have it right?

Bob (27:00):

That sounds great.

Jason (27:01):

Well, thank you very much Bob, for joining us today and for leading the bioethics program here at Columbia University.