What is the Future of Pediatric Ethics?

Brief program-introduction boundary fragment

This morning, there will be

Dr. Mark Siegler

a few little changes, as there always are in our programs, and a couple of, I hope, interesting surprises along the way. But not in Rick's session. Rick's session is as billed. Rick, please.

Eric Kodish

Thank you, Mark. Good morning, everybody. Two quick introductory comments, and then we'll be introducing our speakers. The first is that when Mark asked me to organize the panel, I got excited because there is, I think, a groundswell of activity in pediatric ethics. It just was not here in the late 80s when I was training here in Chicago. There are several pediatric ethics programs around the country that are uniquely dedicated to the questions that come up in the health care of children. So I'm excited to have a panel that looks at that relatively new development. The other piece of that is the second comment, the future-looking nature of the title. The panel as a whole is called What is the Future of Pediatric Ethics? Bioethics has always had a tendency to try to stay ahead of the curve, to look toward the future without necessarily thinking in terms of a crystal ball, because none of us have a crystal ball. But I think part of our job in bioethics is to anticipate what's going to happen. So I'm really excited to have four of the most distinguished pediatric ethicists in the country here to think a little bit about the future of that field. Our first speaker is Norman Faust, MD, MPH. Norm has been at University of Wisconsin since 1973. And I have to say that in the 1980s, when I was a medical student, went to Madison and spent a very nice month with Norm, I remember. He's a professor of pediatrics and bioethics, director of the program in medical ethics, and he founded that program in 1973. He is vice chair of the Department of Medical History and Bioethics, and he is a general pediatrician. He's been chair of the Ethics Committee for 24 years and chair of the Health Sciences IRB for 31 years, a veritable fount of wisdom and experience. He was director of the Peds Residency Training Program for 20 years. And he founded the Child Protection Team. And he was Vice Chair of the Department of Pediatrics at the home of the Badgers for 10 years, from 1985 to 95. So please welcome Warren Faulstein.

Dr. Norman Fost

Santayana said, those who do not study history are doomed to repeat it. In newborn screening, it doesn't really matter, though, whether you study history. It just keeps getting repeated anyway. So I'm going to review some of this history, which just keeps happening over and over again. As

Dr. Norman Fost

Yogi says, it's hard to predict the future, but I think that's not right. I think Dr. Phil got it right when he said that the best predictor of future behavior is past behavior. Pretty much everybody has said that. And so I'm going to just briefly discuss the past behavior of newborn screening give you a very current example to show that the problems just keep happening the same exact same problems keep happening so I'm going to say a little bit about the PKU story which was the first newborn screening program and then some brief comments about some non-genetic screening programs involving bicarbonate oxygen and bilirubin say more about that and then a brief summary of Wisconsin's experience with a rare disorder called MBAD, and then make a prediction, which is not going to be very difficult. So PKU, as most of you know, is a very rare inborn error of metabolism causing profound retardation in virtually all affected children, in which phenylalanine, which is an amino acid that's ubiquitous in protein, gets turned into lots of good stuff in the body. But if you have this disease, that enzyme is deficient. and instead the phenylalanine accumulates and turns into bad stuff that causes brain damage and other problems. This was well known for almost 100 years.

Dr. Norman Fost

And it was known that if you put children on a low phenylalanine diet, you could ameliorate the brain symptoms. But the diagnosis was inefficient. It depended on getting a urine sample from infants at their first ball baby check. which was inefficient and too late. And children who were on milk even for a few weeks had irreversible damage. The diet was very expensive and unpalatable and hard to comply with. In 1960, there were three big breakthroughs. Robert Bethry discovered an ingenious test that was cheap, simple, sensitive, that made it possible to diagnose this condition, to really screen for it.

Dr. Norman Fost

for every newborn on a single drop of blood. Second, the Mae Johnson Corporation developed a milk called Lophenilac that was more palatable and affordable. And third, John F. Kennedy was elected president with his interest in stamping out mental retardation. And Kennedy and Guthrie and a handful of others formed a PKU lobby to create a mandatory newborn screening program which was initiated without any systematic studies about the test characteristics or about the diet. The assumptions of the PKU program were that a positive test confirmed by a whole blood assay would lead to mental retardation in nearly all cases, and second, that a diet with reduced phenylalanine would reduce the severity or possibly even prevent mental retardation. The program had two problems. First, the first... Assumption was false, and the second assumption was false. Other than that, it was flawless. It turned out the test was one of the worst tests ever devised. It had a 95% false positive rate. A positive Guthrie test is 20 to 1 likelihood of being normal. And that's even when confirmed by a whole blood acid. That is, having hyperphenylalanemia in most cases is of no clinical consequence. And second, it turned out that dietary restriction is as harmful as dietary excess. Withholding this essential amino acid means you can't build proteins in your brain or anywhere else in your body. The consequences of these false assumptions was, first, a false positive impression that the diet was working. It was in some cases. But there were many normal children enrolled in the program. But you didn't know they were normal. They were labeled as having a disease. They turned out to be normal. And everybody said, fantastic. The more serious problem was that some of these normal children were made retarded by the diet because of excessive restriction of phenylalanine, and in rare cases, profound protein malnutrition in cases of kwashiorkor began to develop in these clinics, and there were some deaths. The number of children who were harmed by the program of normal children is not known because this was not being studied in any systematic way. There was one other late surprise, which is that the girls who were successfully treated went on to reproduce in the normal rate and were back on a normal diet, so they had astronomical levels of phenylalanine in their blood, which exposed the fetus to profound teratogen. It's probably the most potent teratogen known to the human organism. Virtually 100% of such babies are profoundly damaged. We have a mother in Madison who has now made three such infants. So what are the lessons from this story that keep repeating? First, genetic disorders are heterogeneous. There is no such thing as a single gene disorder, not sickle cell disease, not cystic fibrosis. There is just one mutation for sickle cell disease, but affected children can die in infancy or can live to a ripe old age. Cystic fibrosis, as we know, is a thousand diseases, not just one. So when you screen for a disease with a phenotypic test like a chemical assay, you're gonna wind up with a hodgepodge of different disorders and therefore treatment programs are gonna have different risk benefit ratios for each child, that's point one. Point two, new screening programs which are proliferating are experiments or should be thought of as experiments subject to clinical trials or at least systematic scientific studies with the usual protections of institutional review and high standards for consent. There is no FDA for newborn screening. So anyone who has an idea can just start these things if he can get it through a committee or two. Third, we learned that mandatory programs are hard to stop. When the problems with the PKU program that I described came to light, and it took a decade for these to be elucidated, Nobody wanted to stop routine screening other than the state of Maryland, which was the only state which had enough sense to slow it down and reconsider. And the fourth is that zeal clouds critical thinking. Zeal, of course, is essential for progress. All great accomplishments are usually the result of one or two zealous, and I mean that in the best sense of the word, but zeal is not the same as critical rational thinking. so that when the American Academy of Pediatrics Committee on Nutrition in 1965 sent a letter to the secretary of DHHS, then DHEW, urging that the mandatory PKU program be stopped because we didn't know the significance of a positive test and we didn't know what the right dose of the diet was, it was suppressed and the programs continued. And it was seven years later before some of these facts that I mentioned began to attract wider attention. There are many other examples of screening newborns for treatment, not all genetic.

Dr. Norman Fost

Just quickly, three examples that collectively have harmed, I would say conservatively, thousands and probably tens of thousands of children. Prematurity, the most common cause of death in children, which causes lung dysfunction, hyaluron membrane disease, or respiratory distress syndrome. carbon dioxide retention, acidosis, and death, if not treated, was, quote, solved by a leader in neonatology who said, oh, this is no problem. There's too many hydrogen ions. Just give a buffer of bicarbonate. That'll combine with the hydrogen ions and produce carbonic acid, which will turn into carbon dioxide and water. The water will get excreted, and the carbon dioxide will get exhaled. My mentor and colleague, Jerry O'Dell, said, this is nonsense. Just with a pencil and a paper, this is nonsense. This will create more carbon dioxide, which has nowhere to go, and produce more acid. He proved this in Iraq, that bicarbonate made the problem worse. But every single newborn with this disorder in North America got bicarbonate for a decade or more, until another disciple of Dr. O'Dell's, Mike Simmons, published a landmark study of unethical studies that is withholding standard treatment from affected newborns because it had never been proven effective. And Mike Simmons showed that, in fact, bicarbonate made you worse and that the mortality rate was higher. And of the children who survived, there was a very high incidence of massive intracranial hemorrhage because this is a very concentrated osmotic solution that sucks water out of the brain and makes the brain shrink and lots of vessels rupture. There hasn't been a baby that's received bicarbonate for this condition in 30 years, but for a decade, everyone got it. That is, children of this subpopulation were screened and treated with no systematic studies. Oxygen for 100 years was given indiscriminately to newborns who were blue. They were screened with a simple inspection test. You looked at them, and if they were blue, you gave them oxygen. We learned to refine that with expensive technology and actually measure the oxygen, but we still gave, that is the level of oxygen, but we still gave indiscriminate oxygen for 80 years until Arnold Patz, one man at Johns Hopkins, began to wonder why so many of these babies were blind and found out that oxygen was a major contributor to retrolateral fibroplasia or retinopathy of prematurity. So finally, studies were done. and oxygen was treated like a drug, and dose-response curves were figured out, and we now know what's too much and what's not enough, and we know how to measure it. This was a screening program of the subpopulation with treatment, with the hypothesis that it can't possibly be harmful because it's just a natural substance that's available everywhere. I'm going to skip the Billy Rubin story because of time problems. So screening for treatment is now a phenomenal growth industry, The American College of Medical Genetics in 2005 recommended adding 54 tests to the newborn screening panel because of the advent of tandem mass spectrometry, which made it cheap and easy to screen for 50 or 100 or however many tests you wanted on a single drop of blood. Of these 54 tests that they recommended, 25 produced abnormalities that were not known to cause any disease. That is, they were simply abnormality and abnormalities biochemical abnormalities, and nobody knew what the clinical significance was, but they recommended testing. For 24 of the tests, they were known to be associated with disease, but nobody knew what the sensitivity or specificity of the test was, how many false positives, false negatives, and the treatments for these disorders were largely untested. Yet the National Institutes of Child Health, on the recommendation of the ACMG panel, same chair of both panels, recommended, supported this recommendation to add these tests to newborn blood spots. I want to just give you one example of the consequence of this recommendation. Here's a disease called MBAD. It's an extraordinarily rare disorder of isoleucine metabolism, causing severe mental retardation, failure to thrive, seizures, and death. By 2004, there had been eight cases in the world. Pretty rare.

Dr. Norman Fost

Wisconsin in 2001 pioneered and became the first state to start screening for embedded. And in four years, Wisconsin discovered 23 cases. Well, you say, that's great. I mean, here's a screening program that's picking up this what was thought to be a rare disease. The interesting part was that all of the cases were in families of Hmong descent as an instance of one in 200 births, which would make it one of the most common maybe the most common genetic disorder other than maybe sickle cell disease. Fortunately for these children, their parents didn't believe in Western medicine,

Dr. Norman Fost

had no interest in complying with the recommended diet, and none of these children received any treatment. Five to ten years later now, close follow-up of these children show that they're all normal. One has a mild speech delay, which probably has nothing to do with their metabolic abnormality. None of them has been on the diet, as I think I said. Compliance was not poor, it was excellent. But all these children were labeled with a life-threatening illness. Their parents were told, your child is seriously ill and he or she is going to die if you don't put them on a diet. Well, this is the worst test imaginable. That is, it has 100% false positive rate in the first 10 years, at least, of its use. It has no pre-positives. I think if we keep doing it, I think in a thousand years we'll probably find a case. And that child will get on a diet and will be helped. But in the meantime, thousands of children will be falsely labeled. Some will go on this diet for life, and who knows what the complications of that will be. This is exactly the same problem as the PKU problem. An assumption that this was a homogeneous disorder that a single test could detect.

Dr. Norman Fost

very zealous political advocates to stamp out these rare causes of death, lobbying to have it tested for, no scientific studies, no systematic review, no standards for informed consent. This now is going completely out of control and will be the subject of, I think, Lainey Ross's talk, because, as you all know, the Genome Project has now identified a thousand or more genes associated with disorders, whether they're diseases or not, is uncertain. Conditions whose natural history is unknown. Conditions for which the benefits and risks of treating the phenotype are unknown. Gene therapy, of course, is still a dream. We've known what the basic defect in sickle cell disease was since 1945, and there hasn't been one angstrom unit of progress in finding a

Dr. Norman Fost

molecular-based treatment for that. And yet the National Institutes of Child Health in 2005 sent out a request for proposals to figure out a way to screen for these thousand conditions with a single microarray chip so that I have almost no doubt that that's going to happen and every parent in the country will get a letter in the mail saying congratulations your son slash daughter has 207 recessive conditions and 11 dominant conditions we have no idea what this means or what to do about it, but have a nice day. And by the way, your pediatrician won't know any more about it than you do. In summary, I think the future of newborn screening will be like the past and present of newborn screening, that new tests and treatments will be introduced with little information on test characteristics, the natural history of the disorder, or the safety and efficacy of the interventions. Many children will be harmed from false labeling and stigmatization, and in some cases harmful treatments. Some will be helped, we just won't know who they are. We just won't know who really had a disease and who didn't. And so when normal healthy children come out of this program, it will be very difficult to know if they were children who were destined to be healthy anyway and simply survive the treatment. Thank you very

Eric Kodish

much.

Eric Kodish

Thank you, Professor Faust. Our second speaker is Mark Mercurio. Mark is the director of the Yale Pediatric Ethics Program, associate professor at Yale University School of Medicine, and a neonatologist at the Yale New Haven Children's Hospital. He's coming up to the podium, so I will abbreviate his introduction. No, no, that's fine. I'm not sure this crowd knows you as well as they might. So let's just take another minute to... to tell you. He's the director of medical ethics courses for the physicians, associates, and pediatric residents. And he's a member of the executive committee for the Yale University Interdisciplinary Center for Bioethics. His academic work is focused on ethical issues in pediatrics, particularly in the newborn period. And Mark's title is The Future of Ethics in Neonatology. Please welcome Mark McHugh.

Dr. Mark Mercurio

So does anybody here remember Al Spangler? Nobody here in Chicago? So Al Spangler was a baseball, he came to mind a few minutes ago. Al Spangler was a baseball, I grew up in Chicago, and he was a baseball player on the Cubs. He was not a remarkable, necessarily remarkable player. He had zero, he was a nice guy. He had zero home runs. So as the story goes, at one point he was standing with Ernie Banks and Willie Mays and said, you know something guys, between the three of us, we have over a thousand home runs. And I thought of that when Mark said that we have here a collection of some of the finest pediatric bioethicists in the country. And I thought, as the Al Spangler of the group, I'm here to say, absolutely, we do.

Dr. Mark Mercurio

So I'm here to talk about the future of ethics in neonatology. Interestingly enough, just this month, the AAP Vision of Pediatric 2020 Task Force published a paper about the future. They identified eight megatrends, and I thought that two of them were interesting, and in keeping with what I wanted to talk about today. One, the dynamics of the pediatric workforce, and the other about ongoing medical advances. They also discussed what they called wicked problems, which has kind of a nice New England sound to it, so I thought I'd bring it here as a tribute to John Parris. So, a lot of people don't even know what I look like without the beard.

Dr. Mark Mercurio

But this was and this doesn't help. So the pediatric workforce back in the day when I was training in neonatology in particular, this is what most, not all, we weren't all quite this handsome, but this was your pediatric workforce and your neonatology workforce in particular. But we can do better than this. These are the fellows, the neonatology fellows and first year attendings at Yale University. And you'll notice, that they are all women. And this is a huge trend in the pediatric workforce, to be sure, over the past generation and will be into the future, it would seem, and certainly in neonatology. And we've seen this shift. So what does this really have to do with anything ethical? Well, I don't know. Will this have any effect on the way ethics is done in the future? And the answer is maybe.

Dr. Mark Mercurio

The picture on the bottom is Rosalad, who's a philosopher, at Brown University in recent years, and she was one of my mentors. And she got me to stop thinking just in terms of principle-based ethics and to think more broadly, and introduced me to the work of Carol Gilligan, among others, who in 1982 had written The Voice, and that's Professor Gilligan on the top slide, wrote a book in a different voice. And in this book, she pointed out that it would seem at the time, based on her work, that young women did ethics, if you will, differently than young men. that the emphasis was more on relationships and less on a principle-based approach. And the emphasis was greatly on decisions within the social context. Now, were those findings truly valid? Were they nature versus nurture? Are they relevant today or in the future? I'm not here to tell you. I think it's an interesting question, though, when we consider the future of ethics in neonatology. Because if I walk into the ICU and ask myself, what's different from the past, What's different is that the young people in charge are nearly all women.

Dr. Mark Mercurio

Is that going to affect the way ethics is done in neonatology? I don't know. It's an interesting question. The work of Carol Billigan and many others suggest that it might. So that's one thought among the megatrends. The other was the new technologies that I wanted to mention on this. They identified wicked problems and said these are going to be messy, multifaceted, and multisystem. that will lack clear-cut solutions and are insoluble by conventional means. Well, for pediatric ethicists, and I suspect for most ethicists, this is just another day at work. But they had commented, and the AAP had commented, that this is going to require ongoing, in-depth dialogues or permanent strategic confrontations that confront status quo assumptions, to which I say amen. I think that the status quo or the standard of care has stood to be a tremendous enemy to not just progress, but to ethical evaluations.

Dr. Mark Mercurio

The way that the status quo, and I think Norm touched on this a bit too, the status quo reaches a certain elevated, exalted status, and it becomes very difficult to get away from. I would suggest to you that this, in medicine, not just in ethics, but in medicine, we have the standard of care. And we say that for this particular treatment, when we're deciding about pharmacology, there's a standard of care. I would suggest that our obligation to adhere to that standard of care, the strength of that standard of care, is based on the evidence that supports it. Specifically, if there are randomized controlled trials, if there are no decent trials, are there at least good physiologic reasons to believe that would be the appropriate treatment? There's an analogy to be made, not a perfect analogy, but an analogy to be made. with ethical issues. I would suggest to you that the standard of care with regard to ethical questions in pediatrics, should we resuscitate this group of patients, should we provide this technology to this patient, that the standard of care

Dr. Mark Mercurio

is only as strong as, or should only be viewed as strong as, the ethical reasoning that stands behind it. And so often the ethical reasoning is based simply on, well here we see, this is the Yale symbol here, lux et veritas. I put that there. For those of you who read Latin, lux et veritas means because we say so.

Dr. Mark Mercurio

And that, unfortunately, is so much of what the standard of care is built upon. I think what the future holds, hopefully what the future holds, is communication, evaluation, and consensus regarding the use of new technologies and old ones, and considering the ethical reasoning or rationale behind use or non-use of a given technology. And a case in point specifically bringing us up to the present over the past couple decades is ECMO. So this is a study done by our group. I was the senior author on this, but all the other authors were the ECMO team at Yale. We surveyed all ECMO centers in the Yale cell registry, so everybody who's doing ECMO, 81 of 124 centers responded. And we found out many things about what's done. and a tremendous disagreement over some of the basics. What's the lowest gestational age that it's safe to do ECMO at, or would you do ECMO at? Tremendous disagreements. Do patients who have had an intracranial hemorrhage, are they still candidates for ECMO? No consensus. How much of these things actually have been discussed? Somebody set up standards way back when, and the standards, some people follow them, some don't. But with regard to ethical questions, among the other questions we asked in this survey was how often would you seek to override parental refusal of ECMO for a neonate you feel is likely to survive with a favorable neurodevelopmental outcome if he received the proposed treatment? This seems to me like a fundamental ethical question. So if parents say no and you really think ECMO is the best thing for the child, how often would you seek to override them? So this is what represents a consensus. I don't know if you can read it. That's never, rarely, sometimes, usually, or always. This is ECMO, as is currently offered mainly in the United States, where most of the centers are, but in the UK and elsewhere as well. You can see that the never or rarely group is almost the same size as the usually or always group. There is no consensus on this. There has been no discussion of this. So the future of ethics in neonatology holds, if we want it, a discussion about this question, a discussion about new technologies in general, not just what they should cost or how we should plug them in, but a discussion about when they should be used and about how they should be applied in ethically murky situations.

Dr. Mark Mercurio

Now for the bad news. The big problem in ethics in neonatology, borderline viability, that will still be with us. It's an old, wicked problem, but it's not going anywhere. Just two months ago, the NICHD neonatal network, so 21 major academic centers in the country, published recent data and showed us that survival at 23 weeks was 26% and survival at 22 weeks was 6%. So this shows us kind of where the edge of viability is for these newborns. Now the line may move, it may not move, but what to do at the edge is going to remain a difficult question and one we need to face. What I'm hopeful for in the coming years is that we will address openly and consistently the self-fulfilling prophecy. So not long ago, when trying to figure out what to do about this, I talked to a colleague from another center, a break guy, and I asked him, what do you guys do about 22 weeks? I said, do you guys resuscitate at 22 weeks? And he said, no, we never do. I said, oh good, someone's thought this through and figured it out. I said, well, why not? He said, because we've never had a survivor.

Dr. Mark Mercurio

Yeah, you can use that argument at 26 weeks. So here's the fascinating question. At 22 weeks, for example, or 23 weeks, 26% survive. But mind you, they tried to save 2 thirds of those kids, 68%. At 22 weeks, only 6% survive, but resuscitation was only attempted in 19%. It doesn't make sense to say it doesn't work because we don't try. Therefore, it doesn't work. This is not limited just to extreme prematurity. And by the way, just as a point of information, there are still centers, many in the United States, that will tell people it's impossible to survive if being born at 22 weeks. I'm not here to tell you that it's likely or that it's advisable. This is a whole other talk, as they say. We could get into that. Except to say that when we say it's impossible, when we say that it simply ignores the fact that it's only impossible if you've never tried. For those who try, it seems like it is sometimes possible. Moreover, by the way, in Japan, where they are very aggressive at 22 weeks, the survival for a large series, multicenter series, was over 30%. Doesn't mean it's the right thing to do. It means that for us just to say it's impossible is fundamentally wrong and dishonest. But the problem is not just what about the edge. The problem is also about just using gestational age. John Tyson and the network showed us in a paper published a couple of years ago that we shouldn't just be talking about gestational age because that's not all that predicts how these kids are going to do. The girls do better than the boys. Bigger kids do better than smaller kids. Singletons do better than multiple gestations. Kids who got antenatal steroids do better than kids who didn't. So what we find is that on the left you see a boy who's a twin who didn't get his steroids. His chance of survival is 9%.

Dr. Mark Mercurio

If he's put on a ventilator, which kind of gets to the question of the self-fulfilling prophecy a bit, it's better, it's 14%. His chances of survival without neurodevelopmental impairment is only 3%. Now, on the right, you see a girl who's a little bit bigger, but she's only 22 weeks. Her chance of survival is 11%, but if she's put on a ventilator, and remember that the vast majority of kids at 22 weeks, no one even tries, if she's put on a ventilator, her chance of survival is actually 30%. Chance of survival without neurodevelopmental impairment is 11%. You can see that there would be a fundamental injustice for us to tell the parents at 22 weeks, resuscitation is not an option for this girl, but at 23 weeks, it's an option if you want it.

Dr. Mark Mercurio

And the same thing holds at the other end, at 24, 25 weeks, that if we just use gestation age alone, there will be a fundamental injustice because kids who actually have a better chance of survival will be denied that chance. Or you could look at it the other way and say parents suffer an injustice because at 22 weeks, Those parents were given a choice. At 23 weeks, they would as well. But as we get to 24, 25 weeks, where do we no longer give parents a choice and just say the resuscitation is obligatory? We run into the same problem where we remove parental preference. We remove their control, I think, in an unjust fashion as well. So hopefully, as advised by John Tyson and others, we will move beyond gestational age when we have these conversations. Now, we're going to have the same problem but with different diseases. Trisomy 13 and 18 has entered the conversation and the next decade will be big in the conversation. These children almost never survive past the first month of life. Some do, most don't.

Dr. Mark Mercurio

The question is raised, will they not survive because we don't try to save them? Often they have heart disease such as VSD. What if we tried to save them all? It's the fundamental question. When parents ask you whatever a diagnosis is, what are the chances he could survive? They're not asking. The fundamental question, they're not asking, what are the chances you could survive if you didn't try anything? They're asking, what are the chances you could survive if we tried everything we knew how? And just because they're not savvy enough to ask it, by the way, doesn't mean that we're not obligated to try and address it, even if sometimes the answer is, I don't know. Well, the question that has come up again and again, you've got to be kidding me. OK. The question that has come up again and again is trisomy 13 and 18. These kids are going to have significant major, major cognitive deficits. Should they be offered? cardiac surgery. Some centers do it and some don't. When I raised this issue with a large leadership group in neonatology, one of the common responses was, can we please just not talk about it? Let's just stay away from this.

Dr. Mark Mercurio

Why does neonatology get a separate session when we're talking about the future of ethics in pediatrics? I don't know, but thank you, in any case. I would say that perhaps one reason is that this is one group where people are still arguing over whether or not our patients are persons, regardless of their future mental status, their current mental situation. It occurred to me some years ago when I encountered a case of a child who was less than two months old. This child had a terrible, terrible

Dr. Mark Mercurio

congenital defect and was predicted to have profound cognitive deficits forever. It was going to function at the level of a two-month-old at the best. And it was determined that it was acceptable to withhold artificial nutrition and hydration in that setting. Not long after that, a conversation was had about a girl who was older, maybe six or eight years old, who had the same deficit, who came in with a pneumonia, and they were talking about what should or shouldn't be done. And I asked the question years ago as a lad, well, are we going to offer the parents the option of withholding artificial nutrition and hydration? People looked at me like I was crazy. This kid has what you're afraid the other kid's probably going to have. But for the baby, it's acceptable. But for the older kid, it's not. It's fascinating. And there's evidence to show, which we won't have time to get into, that people see the lives of a newborn, particularly the preterm newborn, as in some ways more optional. Resuscitation, for example, with the same prognosis is considered less obligatory in the newborn than it is in older kids. This has been shown. I think some people in the audience have taken part in these studies. Years ago, I wrote on the question of saving versus creating. Is it because when there's an older child who has a near drowning in a swimming pool and has a major neurologic deficit, we think that that's a child that we are saving, but in the newborn unit, when there's a child who's born and has a severe cognitive deficit, that that's a child that we're somehow creating, we take more responsibility for? It's a fascinating question. This is a fundamental question that we're going to get to. And in the next decade, if I want to be an optimist, and why not, This is something we need to talk about, the moral status of newborns as compared to older children. We've been talking around it and around it. And I will tell you that good academic neonatologists will say, I tried to talk about this once with the ethics committee. And they wanted to talk about personhood and stuff like this. Who has time for that crap? Well, we need to take the time.

Dr. Mark Mercurio

So finally, what's going to happen in the future? In the future, in many ways, clinical ethics education It's going to come of age. The first generation is going to come of age. Most members of my generation who are now the leadership positions in academic medicine and in clinical medicine in general are held by people of my generation, some a bit older, some a bit younger. Most of them had no real ethics education in medical school. Some did, but most did not. But for many years now, we have been teaching clinical ethics. And that, in the future, those who are exposed to this These people who as residents, and I come to the mecca of clinical ethics education, that these disciples now will be in charge.

Dr. Mark Mercurio

I think what should come of this, if we've done a good job, is that ethical analysis of clinical problems will become increasingly accepted. It'll become something that everybody buys into as part of the natural discussion, part of the essential discussion of the cases we consider, if we've done a good job. If we just turn them off to the whole subject It's not going to make things better or worse. It's not going to make things better. It will make them worse. One other question about ethics education is could it make things worse? And I would say the answer is yes, it could. Yes, it could make things worse. And here to tell us why is Alexander Pope, who would tell us, first of all, that there's no substitute for a good head of hair.

Dr. Mark Mercurio

Though I'm not sure that's really his hair. And who said, and we read it in high school, that a little learning is a dangerous thing. He was talking about the period spring where all knowledge comes from in Greek mythology. A little learning is a dangerous thing. Drink deep or taste not of the period spring. Their shallow drafts intoxicate the brain, while drinking deeply sobers us again. The risk in doing ethics education is we give ourselves and our students shallow drafts. We need, my friends, to drink deeply. And we need to drink deeply together and with our students.

Dr. Norman Fost

And

Dr. Mark Mercurio

then I think ethics education, as those who have been exposed to it, take over, not just this. I know I'm preaching to the choir. Or if we're talking about drinking deeply, maybe I'm preaching to the fraternity here. But the point is that those who don't come to ethics conferences, they need to see this as a fundamental part of their job. And they need to have gone beyond the surface, to gone past the four principles, which I think are marvelous and which I teach. But we need to drink more deeply with our students. That's the future. And I thank you very much.

Eric Kodish

Thank you very much, Mark. Our third speaker is Laney Ross. Laney is the Carolyn and Matthew Buxbaum Professor of Pediatrics here at the UFC. And she is currently serving on the Secretary's Advisory Committee on Human Research Protections, fondly known as SACRP, the American College of Medical Genetics, Social Ethics and Legal Issues Transplant Committee, and the Ethics Committee of UNOS, the United network of organ sharing. Lainey is going to circle back to the topic that Norm began us with, a very important one in pediatric ethics, the future of pediatric genetic testing. Thank you, Lainey.

Dr. Lainie Ross

When I thought about what is the future of pediatric genetic testing, I asked myself, and the answer is newborn profiling. And this is actually a great thing for the future of pediatrics. Because all of the people who are adult doctors, you also have to think about it. Because before we do newborn profiling, we're going to be doing profiling on adults. So what is genetic profiling? It's actually the analysis of your entire genome in order to reveal the majority of your genetic variations. And it can be done any time in the life cycle. In fact, 99.8% of all of us have the same genetic information. And what we're going to be focusing on is that 0.2% where we're different. And those are called SNPs. And you get some small variations. But when you have 3 billion base pairs, a 99.8% similarity means we have about a million differences. Currently, only two famous people actually have their entire genome published. And they are Dr. James Watson and Craig Mentor. We've actually done about six or eight of them in the whole world. More will be coming. This is a graph that actually shows the timeline. When we first started the Human Genome Project and it was launched, it took $3 billion to sequence. But in about 2007, we were able to do it for about several million. And the plan is by 2010, 2012, we're going to be down to about 5,000. And everyone talks about the future being the $1,000 genome.

Dr. Lainie Ross

Newborn genetic profiling is not newborn screening. Norm may suggest that this is the future of newborn screening, and it may be, but newborn screening, as Norm has shown, identifies both genetic conditions as well as non-genetic conditions, hypothyroidism, and it's gone beyond that. It's doing hearing screening, and most recently, there's even been a suggestion, for example, of doing cardiac testing in the newborn period. Newborn screening, at least prior to tandem mass spectrometry, which is what Norm focused on, focused on conditions for which early diagnosis reduce the risk of morbidity and mortality. Newborn profiling actually is not going to just be looking for diseases. It will uncover some diseases, some that will present in childhood, some that will present later on. But it's actually focused on looking at genotypes and not phenotypes. So it's trying to look at all of our variations and how they may interact, how they may lead to disease, but how they may also lead to many other aspects of our lives. Some things that we might call recreational genetics, whether we're the type of person who's thrill-seeking and things of that sort.

Dr. Lainie Ross

And what we need to know, and it's actually true in disease genes, but also in all other genes, is that genotype does not equal phenotype, meaning that we're going to learn a lot about genetic variation. Norm is 100%, right? There is no such thing anymore as a simple Mendelian condition. Newborn profiling is also not the genetic multiplex testing that already exists on these... gene chips because, again, those are focusing on rare conditions. But what we're really looking for here with multiplex testing is, again, looking for very specific genetic mutations. By contrast, genetic profiling is going to focus on genetic mutations whether or not they're associated with health.

Dr. Lainie Ross

So what will newborn genetic profiling look like? It'll be mapping all of three billion base pairs of children at birth, probably using the sample from the newborn blood spot. Right now, it's going to be a real investment in time and money, but those costs are going to decrease, and it is going to be less than $1,000 within the decade. The interesting thing is that will make it that we'll no longer actually store newborn blood spots. We will actually just do the entire genetic profile, and we'll store it in a database. And storing 3 billion base pairs will cost cents. And so once you've done the test, it'll be there, and it'll be there for the rest of your life.

Dr. Lainie Ross

And that actually raises huge issues of who's going to be able to open it for what purposes and things of that sort. So what genetic profiling will not be? Here's a cartoon. As you can see from your genetic printout, you only think you're depressed, whereas you are in fact a jolly, happy, full of joy spring type person. That's not what genetic profiling is going to be. It's not going to be able to predict health or behavior. It's more likely to be able to describe propensities. We're going to be talking a lot about odds ratios. We're not going to be talking about diagnostics. We're going to come to understand a lot more of the role of other factors, including social, economic, and environmental factors. And our understanding of these interactions right now are at a primitive level. And that's going to be my one caution, because we are talking about newborn profiling, but we really need to be thinking about it in the adult world. We should have adults as our research subjects first. So what are the benefits of profiling? First, as I've already pointed out, we can generate this data one time and it will be cheaper in the long run. It will not require getting repeat samples and it can be stored quite cheaply. It will allow us to understand much more fully the genotype-phenotype correlations and the genotype-environmental interactions at the society level. So right now we know that there are over 1600 mutations in the cystic fibrosis gene and we know that some of them are quite mild and some lead to pancreatic insufficiency and some lead to lung disease and some lead to very minimal symptoms or just male infertility. So we've come to learn single gene disorder, white variability in phenotype. And then we're also going to learn a lot more about genotype environment. And these are all always plus minuses. If you realize you don't have the genotype that will lead to lung cancer, does that mean that smoking becomes okay? There's also the benefits of profiling is that the real hope and why we're doing it is that the hope is that the data generated will be used throughout our lifetime to tailor our prevention and therapies. So we're thinking about pharmacogenetics, but we're also thinking about, given that we know what our risk factors are, how much sleep, how much exercise, what do we really need to eat, and that it can be personalized and tailored to the individual. But when we're talking about in the newborn world, we're then assuming that informing parents of increased risk will motivate changes in lifestyle. I always view genetic testing, I always call it the New Year's resolution, because everyone says if I knew that my genes did X, that I would change my behavior to Y, and we all know how long our New Year's resolutions last. But it could. I mean, in the ideal, it could allow us to modify our lifestyle starting early regarding adult health problems, because we will know what we're at risk for in adults. We know that adult health problems begin in pediatrics, in fact, before pediatrics, in utero. But what are the risks of profiling? One concern is genetic determinism, beliefs that our health and behavior can be explained solely by our genes. There are going to be psychosocial harms, being in many ways what Norm was saying, but at a much larger scale because... The significance of results in low-risk populations may be different than similar results. Again, there's not going to be as much focus on these single gene disorders. It's going to be multiple genetic environmental interaction disorders. And what a gene means in a high-risk family may be very different from what that gene means in a very low-risk family. And we may be creating much more anxiety than we need to and may be giving people wrong information. There's also the potential of discrimination harms, misuse by insurers, employers, and schools. We may be seeing this currently today with the NCAA policy of testing all athletes for sickle cell trait. And of course, the beauty and the burden of genetic testing is that they run in families, and the implications when one person gets profiled for other family members. Other risks of profiling, particularly in the newborn period, is that parents now will have access to health risks that may not express in their children for decades, and then what right does the child have to privacy as an adult? Since genotype-phenotype correlations are really poorly understood,

Dr. Lainie Ross

and we will then find things that we think we know today are true will be disproven, and this may lead parents to overreact, seek unproven therapies, and again, as Norm suggested, do more harm than good. We also now have a concept of pleiotropy, which is that some genetic changes which we thought were only associated with one disorder are actually associated with more. And the classic example here is APOE, which actually we think about with respect to Alzheimer's disease, but it's also relevant to cardiac disease, autoimmune disorders, what type of long-term implications you will have after head trauma, and many other conditions. And so you could imagine that if a family wanted to know a child's ApoE status because of cardiac risk, it's also though giving them information about their child as an adult and risk for Alzheimer's. And so how do you tell parents only part of the information or knowing that they'll just go on the web and find out all of its other implications? So why are people even talking about profiling when there's so much unknown and we really don't understand we're really in infancy in the sense of understanding genotype-phenotype correlations, and the answer is because newborns are convenient. They spend 24 to 48 hours as a captive population in the hospital. And so the pro for that perspective, and the reason why newborn screening has been mandatory, is because it ensures equal access. And yet currently, given that such screening is not clinically useful, not talking about newborn screening here, talking about newborn profiling, it can only be used for research purposes So the access arguments of equal access are much weaker. The big con and the big fear is the data security systems are not 100% secure, and it'll be critical to have these before we start testing all newborns. But there are special problems in profiling newborns. There's the issue of informed consent. Should there be constraints on parental requests for data? So remember, if we profile reflecting all 3 billion base pairs, and they now all exist, And the fact is, no one's going to stare at 3 billion base pairs. They're going to say, I'm worried about condition X, or I'm worried about this. Let's look at that part of the profile. And the question is, will there be limits on what parents can look at? Will we restrict them to only looking at conditions that are going to present in childhood? Most genetic statements that currently exist say we shouldn't be testing children for late onset conditions. So we could restrict parental access to conditions that only pertain to health and childhood. Most genetic statements also argue, though, against giving parents any carrier information because it's about the child's reproductive history, future reproductive plans, and yet all newborn screening programs inform parents when carriers are found both in sickle cell disease and cystic fibrosis, and often using the argument that it will actually inform the parents of their own risks, so using the child as a canary in the coal mine. Of course, this information may also reveal misattributed paternity. Another special problem in profiling newborns is the question of, since it is research, and traditionally we always have said we should do research on adults who can consent for themselves, maybe we should be thinking about doing it with adults. Again, the big advantage of newborns is they are a captive population. It does raise these special issues about who should have access to it and by whom. And it's going to be very difficult to draw the lines as we realize that things aren't about adult onset or childhood onset conditions. but that it's all over continuing. And finally, there's gonna be this need to deny access to the parents when the child becomes an adult. So it's not like we're gonna be able to hand parents a CD disc carrying the three billion base pair information, because if we do, then parents have this information about their child when they're adults, when these individuals have a right to privacy against them. And the interesting thing is insurers are clearly going to be interested in those 3 billion base pairs, but they're also going to be interested in environmental data as in genetic data. And much of this will end up being stored in biobags where we're trying to collect as much information as possible to understand genetic environmental interactions. And so risks of discrimination and stigmatization are real, and we need to be really careful about how we think about creating these databases.

Dr. Lainie Ross

The last set of issues that are special problems in profiling newborns is what do we do when this child reaches adulthood? Can the child withdraw? In a sense, can the child say, you know what? I no longer want everyone being able to access my three billion base pairs. Of course, they exist. They've already been in multiple different records and databases, and it's not going to be clear what it means to withdraw from any research using genetics that ends up in databases.

Dr. Lainie Ross

We have huge issues of confidentiality and privacy. How do you ensure secure databases over a lifetime? We're going to have to answer questions about who has the right to know, who has the right to access this information. And then the concern is, to what extent can we keep this secure within the health care world, or to what extent is it going to end up being used for forensic purposes, for employment purposes, and for other non-medical uses? So in summary, clearly many issues need to be addressed before newborn genetic profiling should become routine. I'm going to end with this cartoon. Embryonic DNA tests indicate a future domestic terrorist. You may choose late-term lethal injection or the electric hype chair. And the bottom of the cartoon says waiting for ethics to catch up with science. It will be important to address these issues before large-scale routine newborn genetic profiling is adopted. Thank you.

Eric Kodish

Thank you very much, Lainey. Mark was good enough to open the door to a baseball analogy. So I will introduce our last speaker as a clean-up hitter. He is John Lantos. He is the director of pediatric bioethics at Children's Mercy Hospital in Kansas City. And he spent a few years down here at the Southside. And his talk is entitled, Do We Still Need Pediatricians? And I hope the answer will be yes.

Dr. John Lantos

It's always great to follow Norm Frost because I sometimes think of myself as a cynical and pessimistic person.

Dr. John Lantos

But now I feel positively Reagan-esque. I mean, it's morning in America. I also, with trepidation, want to correct Norm. And I'm usually wrong when I correct Norm. And we'll find by noon 18 messages in my email box with documentation. But I think the Yogi Beric quote is, predictions are hard, especially about the future.

Dr. John Lantos

There's a scene in a novel by Erwin Yalom. The name of the novel is When Nietzsche Wept, in which Dr. Joseph Brauer, one of the pioneers of psychoanalysis, tries to convince Friedrich Nietzsche to have himself admitted to the hospital under Brauer's care. The situation is a little complicated. Brauer has agreed to see Nietzsche only after getting a letter from a woman he doesn't know named Lou Salaban asking him to see Nietzsche and suggesting that the future of German philosophy hangs in the balance. Brauer had never heard of Nietzsche nor of this woman, though she would go on to become a sort of late 19th century combination of Angelina Jolie and Martha Nussbaum.

Dr. John Lantos

beautiful, brilliant, controversial headline grabbing and romantically entangled with some of the most famous and brilliant men of her time. Salome, though, has heard of Brauer, particularly of his fledgling experiments with a talking cure for patients suffering from mental illness. She knows that Nietzsche, who had once been her lover, is suffering from both excruciating migraines and depression that's interfering with his work as a philosopher. So she wants Brewer to take him on to treat his migraines, who is a neurologist, but then sneak him into this new psychotherapy in order to help him deal with his depression. Nietzsche, as might be expected, does not want any medical treatment. After all, his worldview suggests that whatever doesn't kill you will make you stronger. So his task is to overcome pain and suffering, not to relieve it. He is a patient from hell. extremely sick, manifestly suffering, but also extremely unwilling to allow Brauer to do anything except crisis intervention for his migraines. He also senses correctly that Brauer is himself having a sort of midlife crisis, partly as the result of his discovery of psychoanalysis and his work with his young protege, Sigmund Freud, through which he's starting to explore his own motivations for doing the things he does. At one point, Nietzsche challenges Brewer's motivations. Why, he asks, is Brewer so intent on helping him? Brewer, obviously full of secrets and secret resistances to exploring such questions, replies, you come to me for help, I offer it. I am a doctor. That's what I do. Far too simple, Nietzsche answers back. Both of us know that human motivation is far more complex, and at the same time, more primitive, I ask again, what's your motivation? It's a simple matter, Professor Nietzsche. One practices one's profession. A cobbler cobbles. A baker bakes. A doctor doctors. One earns one's living. One practices one's calling. And my calling is to be of service, to alleviate pain. Those are not satisfactory answers to my question, Dr. Brewer. When you say a doctor doctors a baker bakes, that is not motivation. That is habit. You omitted from your answer consciousness, choice, self-interest. I prefer when you say one earns one's living. That at least one can understand. One strives to put food in one's stomach. But you don't request money from me.

Dr. John Lantos

I might pose

Unidentified panel or audience discussant

the same question to you,

Dr. John Lantos

Professor Nietzsche. You say you earn nothing from your work. Why, therefore, do you philosophize? Ah, Nietzsche was ready for this. There is one important distinction between us. I do not claim that I philosophize for you. Whereas you, Doctor, continue to pretend that your motivation is to serve me, to alleviate my pain. Such claims have nothing to do with human motivation. They are part of the slave mentality artfully engineered by priestly propaganda. Dissect your motives deeper. You will find that no one has ever done anything holy for others. All actions are self-directed. All service is self-serving. And all love, self-loving.

Dr. John Lantos

Nietzsche's challenge to Brewer resonates for all of medicine, but particularly for pediatrics today. Why do we do what we do, and how do we know where to focus? How does it change as technology changes? Pediatricians take care of children. It's what we do, but how exactly do we do that, or should we do that? What sorts of problems in which children, and to what end? The answers are by no means obvious and become less obvious as children in general enjoy better health and less disease. In a world where most children are healthy, but where those who are sick have rare diseases that are expensive to treat and usually can be treated with only partial success, pediatrics, much more than any other field in medicine, surgery, obstetrics, is in a peculiar historical moment. In all those fields, the burden of disease is increasing, not decreasing. People are living longer, and as they live longer, they are sicker and more weighed down by the burdens of chronic and complex disease. There are more things to treat, and they are more complicated to treat. Obstetrics may be an exception. It's a little complicated. Pregnant women have better outcomes, but they're obstetrics has achieved its success in ways that differ from pediatrics. They haven't eliminated diseases. They've found complex medical interventions to alleviate problems. In pediatrics, by contrast, our efforts at prevention have been phenomenally successful. Many of the most common diseases that I treated as a resident just 30 years ago do not exist or are virtually non-existent today. Children today don't get chickenpox. They don't get H flu meningitis. They don't get epiglottitis. We never see pneumococcal bacteremia. Rotavirus is on the way out. And even the ones that still do exist, the treatment has changed. We don't treat otitis anymore. It gets better by itself. It's all viral. Rheumatic fever. Main thing pediatricians do, culture those throats.

Dr. John Lantos

We still do it, but the number of cases of rheumatic fever has dropped dramatically for reasons nobody understands. So to ask whether we still need pediatricians or to think about the implications for ethics is really to ask what the pediatrics of the future will be. Now, oddly, in spite of the success of pediatrics, And the energy that goes into it has not decreased. Everywhere, people are building these new children's hospitals that are stunning palaces to something bigger, fancier, more technologically sophisticated than ever before, with double beds for parents to sleep in and 42-inch flat screen TVs where you can order room service on the touch screen. What's done in these wonderful new facilities? Well, everybody knows that about half of what's done is neonatal or neonatal-related. Fully half of all admissions in most tertiary care academic centers are either NICU bed days or bed days for NICU follow-up. So we could imagine one trend for the future of pediatrics is everything else will get smaller, NICU will get bigger, they'll start saving 22 and 23 one weekers and children's hospitals will become large NICUs. Bill will be very happy. The rest of us will kill ourselves.

Dr. John Lantos

But imagine an alternative future, which seems not entirely unimaginable, that we will make some progress in figuring out how to prevent or at least lower the prevalence of prematurity. And so maybe there will be half the number of extreme preemies as before. In developed countries, then, the leading causes of death beyond prematurity are congenital anomalies and trauma of one sort or another. The causes of trauma vary. Motor vehicle accidents, child abuse, homicide and suicide in adolescence. Both trauma and congenital anomalies have three possible outcomes. Children either die, completely recover, or are left with lifelong disabilities and chronic health problems. Now, we have a name for these impaired survivors, children with special health care needs. And there are studies of how many they are, what they need, how they do in various health delivery systems. And they need a lot. They need attentive medical attention, attentive social work, nutrition, psychology, physical therapy. Their care during adolescence is enormously challenging. Our pediatric health care system as designed today is not very good at taking care of these are children's hospitals are designed primarily for crisis intervention, but not the long-term management that these kids need. They need pediatricians, but a different sort of pediatricians than the ones we have been training to date. And they comprise maybe 5% to 10% of all children in the United States. The other 90% have very different needs. They need the panoply of preventive treatments that have been developed over the years and that are partly responsible for the worldwide outbreak of pediatric health. Though any student of public health will tell us that it's not really the medical interventions, it's economic growth and better sanitation and limitations on family size and all that, which certainly are a large part of the reason for improved child health. But for this discussion, it doesn't really matter. These children, too, need a different type of pediatrician and pediatric health system than the one we have now. and the one in which we now train our young pediatricians. They need convenient, affordable, point of service care. They need ready telephone or internet access to knowledgeable professionals who can help them sift through the information on what preventive treatments make sense, what signs need attention, and how to deal with the psychosocial problems that are the bulk of the problems these children face. Anxiety, bedwetting, temper tantrums, school problems, obesity, smoking, sexual activity during early adolescence, et cetera. And their parents need genetic counselors to help them deal with the information that Lainey was talking about that is about to be coming online and to think about the sophisticated gene screen tests that will be offered either by their doctors or direct to consumer for $35 on the internet. But in any event, they don't need doctors with the skills that we teach most doctors today in most pediatric residency programs. So why don't we train pediatricians to face the problems of the future? I come back to Nietzsche's question to Dr. Brewer, what's in it for us? And this reflects a little bit on the panel we heard yesterday. We're caught in systems of education and systems of finance. and systems of professionalization that simply cannot adjust to the problems of today or tomorrow. We continue to train pediatricians who are good at responding exquisitely well to the physiologic crises of individual patients. And that's an important task and an important part of pediatrics. But it cannot be the main part if our goal is to promote and protect the health of children generally. For that, we'd need a different approach altogether, but one for which today there is no business model for either medical education or health services delivery. Even the bioethics questions, as asked, primarily make jobs for bioethicists. Who should have access to genetic information? What sort of policies should we develop? Where should we set the threshold for resuscitation? It implies that we are the ones who get to set the threshold. But it seems like what's going to happen in the future as more information is available is people will start to make end runs around this stultified and stultifying delivery system for both medical information and bioethical counseling. Models are already developing outside of mainstream pediatrics. Genetic screening is going direct to consumer quite rapidly. Acute care pediatrics and even prenatal care and ultrasounds are available now at shopping malls. The care of children with special health care needs is more and more becoming the task of parental support groups who teach parents how to teach pediatricians to take care of their children with special health care needs. So we may need a new type of pediatrics and a new type of pediatric bioethics in which empowered and informed consumers look for pediatricians or teams of child health professionals to be their partners in figuring out what combination of prevention, screening, and intervention, both as therapy and as enhancement, will help them create and raise the children that the parents want to create and raise. or to help them let those children die as the parents want them to die.

Eric Kodish

Thanks. Thank you, John. If John can scoot down toward the end, and I can invite our other three panelists up. We have about 15 minutes for some Q&A.

Unidentified panel or audience discussant

I heard it.

Dr. Norman Fost

of technology assessment. Reagan acknowledged it, but one of his last reports which I had the privilege of participating in was a study of health supervision in pediatrics and concluded that it was either proven to be useless, that is, there were studies that had no effects on health other than immunizations for which you don't need a pediatrician, or there were some parts of it that just weren't studied. I was practically convicted from the AAP firm. signing onto this report. But the president of the ADP at the time sent a letter complaining about this and said, how are pediatricians going to make money if they don't do health supervision? It's about 40% or 50% of what they do. And the ADP has been systematically adding visits to the health supervision schedule to help pediatricians keep up. So it's as negative as that. Just as the. It's just as naked in the world as that. And until we have a health care system which is non-profit based.

Eric Kodish

One comment from John and then back to the audience.

Unidentified panel or audience discussant

I think parents need health supervision. It just doesn't work for them every two months for 15 minutes. They need it when they need it. they should be able to call someone and get it.

Eric Kodish

But they also probably still want some wisdom and some advice and some doctor spot sort of guidance, I think.

Dr. John Lantos

Yeah, Bob.

Dr. Mark Mercurio

There is some role for that, but it's a limited role. And I do think that in an effort to accommodate people's different views and approaches and wishes. I don't think we need to throw the scientific method out the window. And I think it's okay to say that if somebody wants to do something to a child that we can't imagine how to harm the child or help the child, I don't have a problem with that. But for things that are actual interventions, I think we need to look for evidence. Of course, the problem is, as I tried to say, that we have our standards of care, some of which are based on good science, and some of which are based on intermittent electronics, and some of which are based on, some of which are based on just the standard of care, because that's how we've always done it. So we can sometimes tend to be a little bit hypocritical by saying to folks who do a complementary or a false complementary alternative medicine, you know, there's no real scientific rationale for what you're doing, and we recognize that that's sometimes the case for

Dr. Norman Fost

what we do

Dr. Mark Mercurio

as

Dr. Norman Fost

well. I just want to say again, as I said in my earlier comments, just because something is complementary, alternative, or natural, doesn't mean it's safe. If you've been with us, how could it possibly hurt any of you? But for 80 years, we've harmed a lot of people living in the hospital. But that's

Dr. Mark Mercurio

a good example of not alternative medicine. That's a good example of traditional standard of care that turned out to be a mistake because it was never properly studied. What I

Unidentified panel or audience discussant

think is interesting is you look at who really is going towards complementary and alternative medicine and PDFs. The families of children with special health care needs. And part of the reason they're doing that is because, one, aren't well-suited for what they're looking for. Unfortunately, sometimes what they're looking for is a cure, which nobody really has it. But it's also just they want much more of a partnership in a handful. And so it's totally. And in fact, the AAP statement, talking about complementary and alternative medicine, almost suggests that it's only for those with special health conditions. But there are plenty of parents who are using it now, for example, for enhancements. The whole use of creatine. for

Eric Kodish

muscle growth

Unidentified panel or audience discussant

and things of that sort. So we are seeing some of that.

Eric Kodish

And the obligation to protect children from that toxicity, that sort of independent obligation to children that pediatricians have separate from parental discretion is always one of the real interesting areas in pediatric ethics. Question?

Dr. Norman Fost

.

Unidentified panel or audience discussant

anything that their friend seems to be going the other way, sort of in the direction that these guys were all on, but, you know, and bigger issues more than that extreme. Yeah, yeah, yeah, that if the behavioral problems and all the problems that are now the most common problems, but that's both in pediatrics and as a result of childhood and pediatrics activities in adulthood, or as we were, And yesterday we were doing a hackney in early childhood development and simple interventions like having a home visitor go to his house once a week for the first six months of life. Our life could have a much bigger impact on overall population health than anything we've been doing so far. But don't hear it from the American Academy of Pediatrics. Don't hear it from Congress and Health Reform.

Unidentified panel or audience discussant

and you remain with a 15 minute visit and a teacher holding a behavioral issue from the outpatient perspective. The last is put back a month back because it does raise a question, is that where we want pediatric to go? If we do, we really have to change our structure of our education. So there is what it looks like. I'm going to send viewing there as being several different tracts in pediatric. You might want to have your acute care tested off with one type We're going to have a very brief comment by Mark. Last one by Mark. The last comment? Second to last, because we need to respect your elders. No, I would suggest, and I think this is what

Dr. Mark Mercurio

Ladies, I would take ladies' argument one step further and say that I don't think it's necessarily carbon stone that pediatricians are the answer. That maybe pediatricians are the ones that do treat kids when they get sick. Maybe the people who deal with issues such as childhood obesity, etc., things that require a very different approach, maybe aren't going to be pediatricians. I would say a huge problem for kids is the fact, for so many kids, my wife is a teacher, is that a huge number of kids can't read and write well. I would suggest to you that that's not a problem for pediatricians to fix. There are others who are better suited to fix it. And I know that they can. I can't say that. I would say some of these huge problems that we identify as pediatric problems, maybe they're not going to best be fixed by pediatricians. Maybe that's not going to be our

Dr. Norman Fost

role. I'm going to close with an optimistic comment. So we believe John is the most cynical and best person in the room. The University of Wisconsin School of Medicine and Public Health changed its name five years ago. and it wasn't just a name change. I spent the last two days with a whole bunch of colleagues, with the whole first year class, essentially what's become a public health curriculum, and the case that we discussed the last two days was a bad baby, and how did this baby turn out so bad, and what were the causes of it? And it was exhilarating. I mean, these students spent two days, and they went to the legislature, and they talked about people, and they looked at our driving laws, a hundred different things and really were abuzz with all the different ways of trying to produce better babies, apart from medical, apart from trying to treat him or her after they're here or just doing abortions and things like that. And there are other schools that are starting to do things like that. So I think there is starting to be a shift in looking for social, political, public health solutions to these problems instead of the tired old doctor, patient,

Eric Kodish

I would like to thank our spectacular panelists.

Eric Kodish

We're going to have a very brief break now. I'd like people to gather back at 9.50 for the next session. Thank you.