 So Maggie Moon is an associate professor of general pediatrics and adolescent medicine at Johns Hopkins University and faculty of the Hopkins Berman Institute of Bioethics. She currently serves as the chief medical officer of Johns Hopkins Children's Center and she's also a member of the Center and Community Health Research at Johns Hopkins Bayview Medical Center. Professor Moon was a fellow at the McLean Center as well as a Robert Wood Johnson Clinical Scholar at the University of Chicago. Professor Moon devotes her a clinical time to Johns Hopkins Pediatric Emergency Department where she teaches residents in an urgent care setting. She also teaches clinical and research ethics to fellows, residents, and students at Johns Hopkins Hospital and School of Medicine. Dr. Moon's research interests include empirical evaluation of ethics in everyday clinical practice, teaching and evaluating house staff education and ethics, and the ethics of community based research. Today Dr. Moon is going to talk with us about pediatric bioethics in a post-factual era. Let's welcome Dr. Moon. Well good afternoon and thank you very much. I'm always so excited to speak to this interesting group of people and about topics that we all find so important. So honestly this one is a topic that has emerged from anxiety on my part so I probably like many of us I have been watching sort of with some horrified fascination in these last several years where there's been a real rise of an anti-intellectual bias and anti-science bias and I try to discount it as just rank propaganda and then I remember the power of propaganda and the importance of propaganda in the way that our social and political world functions and it reminds me that we'd better stop and to pay close attention to this notion of post-truth and we have to come up with a consideration of how we ought to be responding in for this talk is in my own my own world of pediatric bioethics and pediatric clinical practice. There is the answer. So I have no disclosures no reportable disclosures. So here I'm trying to got two systems going here. Here's what this notion of post-truth has come to mean so this is it was the Oxford dictionary word of the year in 2016 which I think is demonstrative. It really has come to represent the sort of fascinating rats nest of propaganda emotion and evidence through which we have to slog on a daily basis to communicate with each other and to understand how our world is working. It is a wonderfully frightening phrase. So when I think if we believe as I generally believe that good ethics does require good facts and we've heard that several times in the last couple of days that ethical analysis is best when it starts with good facts facts have to have some weight. And so if we live in a world where the whole notion of fact and expertise is challenged it's hard to find footing for an ethical analysis of competing moral obligations. So the questions that come up here are the practical. So if we're struggling with the whole notion of fact the first question is well what facts should I use as a pediatrician what facts should I use with my patients and how then you have to think again about well what facts matter whose facts matter and then what in overall has happened expertise. And because I am by nature a problem solver I want to know am I contributing to this problem are we as a profession contributing to the problem. If so what are we contributing and what are the solutions. So this is a little bit of history this is George Orwell and I take some cold comfort in the notion that we actually have been here before. So this is Orwell writing in 1943 looking back on the Spanish War and Orwell was really anxious about the notion of how a totalitarian government totalitarian leadership could dispute the very idea that objective fact existed. So he's writing about this and he's he's really thinking about history and about how could history ever even be truthfully written. I think that today if we change the word history for science that's sort of where I feel like we stand today there's dispute about whether science can ever be truthful that science could ever be fact. Orwell goes on to consider the implications that a totalitarian leader in control of the facts could convince us that two plus two equals five that what you just saw or read didn't really happen maybe even that that shooting in California last earlier this week was in your imagination. So the question comes up what is happening to facts there's been several explanations of sort of what might be going on in terms of our inability to have faith in fact. So first one is identity politics and I think the notion of identity politics explains that in certainly in stressful times but whenever there are big strong socio-political groups the whole notion that group identification is more important than any other sort of expression of facts. So the whole notion is that group identification overwhelms people's interpretations of fact that because of the group the group has to come first and so you only absorb those facts that support the group identity. The backfire effect is another really interesting one and this is one that has come up a lot when we talk about resistance to vaccines in pediatrics. The backfire effect shows that in a situation where evidence is disputed the more facts I bring to the table the stronger the resistance will be on the other side. So the more facts the more evidence I offer the stronger is the resistance against those facts. So it really puts those of us who believe in facts at a disadvantage when we're trying to convince patients about something as complicated as vaccination. I think the confirmation bias again is a similar thing we tend to hear only those aspects of facts that that support our internal beliefs. So the whole notion of distrust of expertise the phenomena all of these contribute to this notion of distrust of expertise but what I worry about is how are we as a medical profession contributing to that distrust. So in order to explore this I want to talk about two cases I want to talk about vaccines and I want to talk about newborn screening programs. Now every time I talk about the notion of vaccines every time I raise the possibility that pediatricians might not always be right in the way that we talk about vaccines I steal myself for some backlash because I certainly have received a lot of backlash about this. So in self-defense I want to start out by saying I am completely vaccinated my children are completely vaccinated and even my dog is completely vaccinated. I am a believer I believe in vaccines my patients are vaccinated right I really do believe very strongly in the public health value of vaccines but we know that in this country we still have some small pockets of persistent vaccine refusal there's substantial vaccine hesitancy and lots and lots of public health concerns about the diminished herd immunity so that our vaccine programs are becoming weakened. The newborn screening program is something that you probably may have heard a little bit less about but the newborn screening programs involve a sort of a mandatory program in most states where infants twice in their first two weeks of life undergo heel stick testing blood is collected very small about a blood is collected to check for diseases that are either heritable or some or sort of congenital diseases that may not have symptoms early on in life but certainly can be very devastating so the best the best reasoning for these newborn screening programs are to identify diseases that are treatable if you catch them before symptoms arise but the program has expanded far beyond those sort of diseases like phenyl ketoneuria or sickle cell where early onset treatment actually does make a difference to include a huge number of programs for which there is really there's testing but probably really no treatment. The challenges to the newborn screening programs from the public perspective have to do with both their and mandatory nature but also this other side of it that there's a challenge to the notion that somebody is storing my child's blood for reasons that i'm not quite sure i understand because the newborn screening programs they don't discard the blood spots once they're used for the testing they keep the states tend to keep them for three years or three months or for some unspecified period of time and physicians or researchers are allowed to do research on that blood so parents have sort of raised some concerns about the notion of storage and the use of remaining blood for research this question about who has your baby's DNA has come up so these are two really interesting cases that bring me to sort of the way that i often talk about unpacking important ethical questions and so this is the four topic model looking at mark this is from a very profoundly important book about called clinical ethics i think some of you might have used it or read it in your time this is mark's book and this four topic model is a wonderful way to unpack ethics questions i use it i teach clinicians to think about ethics not necessarily ethicists but clinicians and the four topic model is remarkably helpful when you're working with clinicians because it's very much like differential diagnosis it sort of fits in the same pattern it triggers those same ideas in your head and actually i find it incredibly helpful because if you use it correctly answering these four topics you know sorting through these four topics can change an incredibly naughty question down to one that really there's only one or two things that you need to continue to sort out so i'm a huge fan i want this sort of i want to ask a sort of a meta question though where are the facts in these in the four topic model where to identify facts so one of the things that i've noticed in years and years of working with this is that we tend to say that the facts are on the medical indication side on the patient preference side we impute values these are not necessarily facts i mean it's a fact that a patient expressed a wish but the wish is an expression of values but on the medical side when i talk about what's the evidence for the plan of care what's the prognosis what's the likelihood of treatment those are all fact based right they're based in outcomes research they're based in the best current evidence they're best based in the best science again on the patient side though what i'm hearing about is values the concern with this is we and i think other people are raised to sort of a similar question today which facts are those that we adopt as most relevant how am i selecting the facts to support my side of the argument or my side of the analysis is our selection value free and if it's not value free what do we do with those value frameworks that affect our decisions about facts should i let the patient know here's a value framework within which i'm selecting my facts the same question applies to the patient's values are they fact free can we stop and say well these are just values so if we expanded the four topic model a little bit to sort of think about not only my sense the physician the medical indications the doctor's facts and the patient's values but what about the doctor's values and the patient's facts where would that get us in this discussion with our patients so this is going back to vaccine vaccine hesitancy if i expand this i hear i have my doctor's facts and these are these are the vaccine vaccines work they're safe herd immunity and the public's health require high vaccination rates we think mostly 92 to 95 percent some of the numbers vary but we need high vaccination rates for herd immunity to work another fact on the doctor's side is that the vaccine schedule is logical enough to justify adherence to it it it's not uh written in stone but it's pretty logical it works well it's pretty logical it's logical enough on the patient's values side we hear patients say my child first so we interpret that as selfishness we interpret that as putting my child above other children i'm willing to freeload on society i'm willing to always sort of discount the needs and the values of the public's health i'm putting my child above everybody else we hear parents sort of say they have some suspicions about governmental mandates we interpret that as well you're a conspiracy theorist you're just having weird anxieties parents say it you know it's my self respect i'm in control of my family i want to be the one to say how things happen we hear that as sort of arrogance i refuse to participate in the medical world and also this notion that the faith in the doctor is an unconditional and that just hurts our feelings let's now go to the patient's facts it's true that some children are low risk children who are healthy children who live in a community where the vaccination rates are high children who have access to high quality medical care are probably at lower risk from vaccine preventable diseases than other children parents know the fact is that other people have altered the vaccine schedule without any harm to them so why can't i do it and parents also know that there are challenges to vaccine science they're not really very good challenges but they certainly sound sciency right there if you look online there's all sorts of things that sound very much like science challenging the value of vaccinations okay on the doctor's side though let's take for a second the doctor's values and we always talk about the doctor's facts but can we talk a little bit about the values one of the values that comes up when people are really adamant about vaccine programs is this commitment to the public's health that herd immunity matters the public's health matters physicians talk about the importance of a consistent message we all have to have a unified front here we need to say the same thing physicians talk about the inefficiency of having to negotiate about vaccines with every parent in a busy practice and also there's a professional ego here and doctors do get anxious and frustrated why is everybody just arguing with me i am the expert and expertise should matter aka trust me i'm a doctor newborn screening a very similar interpretation on the doctor's fact side screening is minimally invasive offers potential protections for the child certainly a public health benefit patients values again my child first my family my decision i'm suspicious about mandates generally and i'm anxious about science and i'm anxious about research again the patient's facts though and this is one that we tend to discount research is not the same as clinical care patients may not be be able to express that in terms of the belmont report but they get it like if you're talking about research you're really not talking about my child research isn't isn't my duty and not necessarily in my interest or that of my child so now let's get back to the doctor's values we use them to make sure that the doctor's we use the facts that screening is safe and minimally invasive it's important it works but there's also a notion i've as a physician i have a duty to the child in front of me but in the back of all this is my duty to the public's health again i really believe in the data in the value of big data about sort of using these masses of numbers of samples to identify disease to get smarter about disease i do feel a duty most physicians do feel some duty to the public's health and the notion of research brings me to this point though because i think as i teach medical students and i listen to people talk about health care i think the notion of our duty to the public's health is being drawn more and more and more into clinical medicine not even saying that's a bad thing i started this business from the from the aspect of public health i'm a believer in public health i worry though when we when we combine both public health ethics and clinical ethics in the same encounter with patients because i think it's remarkably confusing and opening us to the distrust from our patients if we think about public health ethics the you know the primary relationship is between the state and the community it's not about an individual person the whole basis of the doctor-patient relationship actually the whole basis of the trust that we say is critical to the practice of ethically relevant clinical medicine is the trust between the doctor and the patient and that trust is based on an understanding from the patient that the physician is looking out for my best interest so think about what's happening when the doctor is actually operating on two levels of duty the duty to the patient which is important but also this notion of a duty to the public's health i'm afraid that our patients are hearing us do this and worrying about it and it's it's um weakening this trust that we intend to have between our patients so public health ethics we're maximizing the well-being of the group clinical ethics it's really promoting individual well-being public health ethics the good is socially divine defined the whole notion of patient autonomy and clinical ethics between a doctor and a patient is our duty to hear this patient sense of the good right to really promote this patient sense of well-being contrary to the notion of public health ethics public health ethics promotes public benefit sometimes over individual well-being clinical ethics we don't do that public health ethics it's social justice even over individual autonomy clinical ethics is all about respecting the individual so you see the difference and i hear lots and lots and lots and when i'm teaching medical students as i said but even in clinical practice we're talking about choosing wisely which is supposed to be about the patient's best interest but it comes from a public health perspective comes from the notion of resource allocation so i think we need to be concerned when we're thinking about public health and clinical ethics that we are we are fuzzing the boundaries between these two things and it's to the detriment of our patient's ability to trust us so why are we doing it i think physicians sort of have this broad notion of a therapeutic privilege if it's in my patient's best interest i don't have to tell them the truth about this but honestly public health bias that would never qualify as something that we can avoid discussing because of therapeutic privilege it's an interesting notion so post-truth this era of post-truth feels to me like a great time to remind ourselves to shore up our fiduciary duty to our patients which involves acknowledging competing duties competing obligations between public health and clinical ethics on also understanding that our use of facts is value-based as much as our patient's use of values might be fact-based we have to expand our acceptance of the patient's approach to facts or the patient's understanding of facts there's one other in the last couple minutes there's one other point i wanted to make about post-truth and it's another challenge to address the broader concerns about integrity in science i have this sort of gruesome habit of collecting popular media messages about scientific lack of integrity so failures of scientific integrity and the scary thing is it's way too easy this is not even hard anymore these are all from the front page or the you know prominent page of the new york times and only in the last couple of probably the last year at least so we remember the memorial slone catering debacle where they just decided they didn't have to disclose conflicts because they were sort of above all that because you read the article in the york times about vitamin d science and the guy that's the vitamin d grew he's changed the way that we all think about vitamin d and vitamin d supplements gets hundreds of thousands of dollars from those supplement manufacturers but says it's not important because it doesn't change the way i think about my work science for hire this global energy balance network that was funded by coke and sort of told us that it was more about exercise than ingestion of sugar like if you just exercised enough sugar didn't cause obesity in this last one data fabrication this notion this uh this was also from the new york times where this was some work about stem cells and we we pair up heart muscle harvard says the guy fabricated all his research and i think this one actually came with really sad statement really sad letter to the editor the institution can retract can retract the publication with false data how are we able to retract our textbooks how are we to apologize to our patients who've been treated by false guidance and i think this is a real plea for all of us in our work to be more aggressive and more demanding about integrity in science because it's our profession so the things the key points that i think we need to make about post truth and how we can respond to post truth the first is that the fax framework should include our own value overlay we need to cop to it we need to know what we're bringing to the table and understand that our patients might want to know as well if our primary duty is to is to the patient then our duty to the public's health might represent a real conflict the conflict that our patients are sensitive to assessment of our patient preferences should respect their fat content some of the facts that patients bring to the table are very very valid and if they're not our patients really do deserve our attention and our time to help them understand a better approach and the third one is that the medical industrial complex is a threat and we have to stop pretending that we're immune with lots and lots of public information about how we fail as a profession to tell the truth we cannot possibly intend for our patients to trust us when we continue to fail the to tell the truth so here's orwell again and i think the way he said this there really only two safeguards in this era of post truth one is that however much you deny the truth it goes on existing and even as it were behind your back and consequently you can't violate it the other is that so long as some parts of the earth remain unconquered the liberal tradition can be kept alive and i think there is hope in that there's challenge however so thank you very much it's been a wonderful session i have one contextual question you know you rightly so as did the previous speaker emphasize both doctor patient relation trust communication and fiduciary duty and i'm very concerned that the context of this includes that families and vulnerable individuals are likely to trust celebrities politicians and thing they see on social media yeah and there is no acknowledgement of the conflicts of interest there is no sense of if i'm in a vulnerable situation and anxious that i can be manipulated and have false beliefs such as vaccines and there's no consequences for the harm done how would you think we should really address that because it's out there you know that's a really interesting question thank you for that so i have seen some successful responses there was a couple years ago a really wonderful campaign by a bunch of hollywood types to promote vaccination against pertussis i don't know if you guys remember it but it was actually people were standing up saying hey we need to help so i think on the other hand there's always been charlatans sort of at the edge of science right it's never it's never been different than that we just see more of it now because we there's more media available to us but i think in with some comfort i do believe that science matters and that the arc of science may be long