Medical Ethics in Obesity Care and Research

Key Takeaways

Ethical Principles in Adult Obesity Care and Research

Ethical care requires balancing clinician guidance with patient autonomy, using non-stigmatising language, and focusing on improved health rather than weight loss alone. Transparent, compassionate communication supports shared decision-making and trust. Research ethics require honesty, especially around participation and expectations. 

Ethical Complexities in Paediatric Obesity Care

Child-centred care should involve families while respecting the child’s perspective. Emotional wellbeing must be protected through age-appropriate, sensitive communication. Healthcare professionals should create stigma-free environments that empower both children and caregivers.

Systemic Barriers and Supportive Environments

Equity in access to care remains a key concern, particularly for families facing economic or structural challenges. Reducing obesogenic environments through public health and urban planning can help make healthier behaviours easier to enact.

Challenges of New Treatments and Transitions in Care

Emerging pharmacological treatments raise ethical questions, particularly for children. Ethical care must balance innovation with caution, ensuring long-term safety and equitable access. Transitions from paediatric to adult services also require careful, ethically guided planning. 

Family Dynamics and Engagement in Treatment

Engaging families – especially in cases with limited resources – requires patience and relationship-building. Ethical practice involves sustained support, early intervention, and persistence.

Future Directions and Next Steps

• Enhance access to stigma-free, person-centred care by encouraging healthcare systems to embed ethical principles into routine obesity management for all age groups
• Expand research on ethical care models by examining how shared decision-making, non-stigmatising communication, and equitable access can improve outcomes
• Strengthen ethics training for health professionals by integrating ethics education into clinical training and ongoing professional development

Transcripts are auto generated, if you spot an error, please email enquiries@easo.org

Speaker 1
00:00 – 03:00
Good morning everyone. Welcome to this monthly meeting organized by IASO and held by the Collaborating Center for Business Management Group. My name is Melania Manco. I’m co-chair of the IASO comms and today I’m replacing our president, Professor Volkan Yumuk, who could not have done. I’m an endocrinologist by background. Today, we will have the opportunity to discuss what are key ethical challenges in adult and pediatric obesity care. We will also discuss about best practices, ethical best practices in obesity care, but also research, which is quite important to me. And also autonomy, consent, and equitable access to obesity management. This is a, this kind of webinar is fully aligned with the scope of these monthly webinars, which are held to share knowledge and expertise across the ASO-COM network to be to announce obesity management and patient care. The meeting will be recorded and will be available later on on the IASO website for your use. You can at the hand provide feedback on the quality of this webinar. This will help us to improve our report and please do it for us. And also you can have a question by using the chat, the question and answer chat, and we will discuss with the two speakers later on at the end of the webinar. Before introducing the two speakers who are with me today, I would like to remind you that the IASO annual meeting is next month is very closing time and we’ll be in Malaga, Spain on May 11 to 15. And you are more than welcome to join us in Malaga. So going to the speaker, I don’t wanna waste your time. The first speaker is Professor Sarah Hall from Yale School of Medicine. Professor Sarhal is Director of the Cardiology course at the Yale School

Speaker 2
03:00 – 03:00
of

Speaker 1
03:00 – 03:11
Medicine and Associate Director of the Program for Biomedical Ethics. So Professor Sarhal, the floor is yours.

Speaker 3
03:13 – 03:30
– Thank you so much. I really appreciate the kind invitation. I’m going to go ahead and share my screen. All right, can everyone see that OK?

Speaker 1
03:32 – 03:32
Yes, OK.

Speaker 3
03:33 – 07:58
Perfect. All right, so we’ll get started. So again, thank you so much to Iasso and the organizers for inviting me to give this talk. It’s really an honor and a privilege to speak with you today. And so we’ll be discussing some of the ethical challenges in adult obesity management and research. I have no conflicts of interest to disclose. And the objectives for today’s talk are to discuss some of the best practices for respecting autonomy and promoting shared decision-making in the management of obesity, to address some of the barriers to ensuring equitable access to obesity treatments and resources. And finally, to review some of the ethical considerations in adult obesity research. Now, obviously this is a tall order for 20 minutes, so I’m going to try to hit some of the most salient points, but recognizing that you could do a much deeper dive into any one of these areas, and indeed could probably spend a whole day conference on them. So I’ll try to hit though, what I think are the most important points to launch into a fruitful discussion later. So, first, I want to spend a little bit of time discussing shared decision-making and what it actually means and how it looks and what it entails, because I think it’s important that we’re all on the same page when it comes to shared decision-making. We often talk about patient autonomy, but autonomy is sort of ensuring autonomy is necessary but not always sufficient in the decision-making process, or perhaps stated differently, I And so I think it’s important to understand what are the benefits of shared decision-making and how that can actually ensure autonomy more than simply just asking the patient how they may want to proceed. So shared decision-making really entails an engaged and collaborative approach to operationalizing patient-centered care. And shared decision-making is predicated on the clinician bringing to the table his or her expertise regarding the benefits, risks, and alternatives of any therapy that’s offered or any treatment. And it also requires that patients bring to the table their own expertise regarding what their own goals, values and priorities are. And in an effective and ethically sound shared decision-making discussion, really you have both parties coming to the table to reconcile their respective expertise in order to come up with the best decision that will lead to the best outcome from the patient perspective, which may, and what that best outcome is, may differ from patient to patient, which is why it’s important to really kind of merge these complementary expertise areas. So, you know, the concept of moderation, which of course is featured prominently in Aristotelian virtue ethics, but is also a really important component of modern shared decision-making, the concept of moderation is key. specifically moderation with respect to how much influence we as clinicians exert when we’re having these discussions with patients. So sort of if you think about like the traditional paternalistic model of, well, oh, the doctor knows best, you know, we’re going to really lead the decisions and tell patients what we think they should do. And, you know, unless there’s really an exceptional situation, they should just do what we say. Obviously that’s not how we practice medicine anymore, we recognize that that sort of older paternalistic model of clinicians driving the decision-making really can compromise patient autonomy because we’re sort of assuming too much agency and telling them what we think that they should do. And in addition to compromising autonomy, it can actually compromise the concept of beneficence as well, because again, what a good outcome is for one patient may not actually represent a good outcome for another patient, or alternatively put, what we as clinicians might perceive as the best outcome may not be what a patient perceives as the best outcome. So if we don’t elicit the patient’s own goals, values, and priorities, not only are we almost definitionally not fully respecting their autonomy, but we may not be promoting the best outcome either. That being said, Sometimes I think in the modern era, we’ve allowed the pendulum to swing too far in the opposite direction, and we’re a bit

Speaker 2
07:58 – 07:59
too reticent

Speaker 3
07:59 – 09:49
to overly influence the discussion in a well-meaning effort to preserve patient autonomy. But I would argue that this too, we need to be very careful because if we are too reticent to intervene when we think a patient is making a decision that may proximately represent what path that they would prefer to take, but because of perhaps an incomplete understanding, may actually go against their own stated goals and priorities, they may actually make a decision that’s going against their best interests. Not what we as clinicians perceive to be their best interests, but what they themselves articulate as their best interests. And in this way, it seems paradoxical, but I would argue it sort of makes sense that if we are too reticent to exert our own influence in decision-making, this may actually compromise patient autonomy as well. Because of course, autonomous decisions are necessarily well-informed decisions. And it’s not reasonable to expect that patients are going to be automatically as well-informed as we are when we’re the experts in managing these conditions. And so it’s really important that we make an effort to make sure that patient decisions are maximally informed. And it does require really a balance between having enough courage to kind of step in and say, “Well, actually, I’m not sure that this decision makes sense in light of these preferences that you’ve expressed,” but also to have the humility to step back at times and say, “Well, maybe I would not choose this for myself, but this patient has a clear rationale for why they would choose this treatment pathway rather than that treatment pathway. And actually, it is really commensurate with what their own goals are, even though those would not be my own goals.” So it’s a balancing act. It’s an act that, you know, the importance of moderation, again, is key. And so I think it’s important to keep this in mind when we counsel patients, because

Speaker 2
09:49 – 09:51
it’s

Speaker 3
09:51 – 11:35
more common than not that there may be different outcomes that might be preferable for different patients, particularly in the management of chronic disease. And so what are some discussion strategies that I think are important when counseling patients clinically? So I think first off, it’s really helpful to start with open-ended questions regarding patient goals and priorities. So, you know, when we’re talking about the management of obesity, for example, for some patients, weight loss may be the primary goal, but for many patients, their primary goal is to improve their functional status. They want to be more active. They want to do more things with their friends and family. For other patients, improved cardiometabolic health is their primary goal. And so it’s important that we really have an explicit conversation with patients and let them lead the way in terms of what they’re hoping to achieve when they come to see us. It’s also important to be really mindful of personal bias. I also will use this moment to underscore that we all have personal bias. This is part of the human condition. And actually, I think that when a person feels like, “Oh, I’ve fully educated myself. I have no more bias,” I’m worried that that person is going to make bias decisions because they’re not even aware of their own bias. So rather than saying we should strive to be completely bias-free, which is not how the human mind works, that’s not how we evolved, we evolved to be able to make quick decisions with incomplete information in acute settings. And while it may be adaptive in acute settings, it can be maladaptive when establishing long-term therapeutic relationships. So just recognizing what are the sort of quick assumptions that we may tend to make and how can we mitigate that, encounter that through careful

Speaker 2
11:35 – 11:36
reasoning and

Speaker 3
11:36 – 12:04
discussion and continuously striving to educate ourselves as to why our biases may be ill-founded and often are ill-founded. And along those lines too, once again, I think it’s just really important to understand, don’t assume, don’t assume that because a patient has done something in the past that this is how they want to proceed in the future. Don’t assume that because of a patient’s background, they’re not going to be motivated or able to make

Speaker 2
12:04 – 12:05
certain behavioral

Speaker 3
12:05 – 12:45
changes. Don’t assume that a patient from a certain background wouldn’t be interested in certain pharmacotherapy or surgery. It’s really important to ask because we can’t know unless we do. I also think it’s really important. This seems obvious, but it’s something that we are not always good at as clinicians. It’s important to avoid overly leading questions or morally loaded language. So Like, don’t you want to do this? Or, you know, referring to, for example, visceral adiposity as bad rather than metabolically active or pro-inflammatory. It’s just really important that we choose our language carefully.

Speaker 2
12:45 – 12:46
And also,

Speaker 3
12:46 – 15:32
again, I will say that this is not to say that, you know, you must never make a mistake. We are human, and sometimes making, during difficult conversations, we may say something that is not as sensitive it should be, or even if it is a very reasonable thing to say, patients may misperceive it. And so it’s important, again, to sort of have humility and willingness to acknowledge when we say something in a bit of an awkward or clunky way, and always strive to make amends for that when that happens. And again, going back to this idea of, you know, how much influence that we should have decision-making as clinicians, I would submit that it’s absolutely okay to say what you would choose for yourself in a certain situation, particularly when patients ask, which is something that I think happens not uncommonly. “Well, doc, what would you do if you were in my shoes?” or “What would you do if this were your family member?” And I think it’s actually often quite appropriate to say what you would do, but it’s, again, you can’t stop and just say, “Well, here’s what I would do,” but but rather explain again, what’s your rationale? Here’s what I would do because my number one priority is X. And I think that taking this pathway, this decision would be most likely to achieve my goal. But recognizing that if my goal were Y, perhaps I would choose something else. So just being really explicit when explaining your rationale is I think critical. So some of the key points in particular that I think are important to bring to these discussions when treating patients with obesity are as follows. So, first I think we need to acknowledge, of course, that the pathophysiology of obesity is complex and multifactorial. I know that I’m sure I’m preaching to the choir on this webinar, but it’s something that, particularly when I’m speaking with other cardiologists, this is something that I think is really important to underscore. So in some people, they may have a genetic propensity to obesity and that may become manifest when exposed to an obesogenic environment, which is the case in much of the Western world. Certain medical comorbidities or medical treatments for their comorbidities may promote weight gain. Certain lifestyle habits, which of course are influenced by individual choices, but also very heavily influenced by our social context and by our built environment. And again, I just mentioned this, but our environmental factors really heavily influence a lot of the lifestyle choices that we make. And so I think it’s important to recognize that few people are making decisions in

Speaker 1
15:32 – 15:33
a

Speaker 3
15:33 – 18:38
neutral vacuum, but rather our decisions are heavily influenced by the behavioral patterns around us, as well as the resources that we have at our disposal. It’s important too to recognize that stigma and implicit bias are extremely common and that patients with obesity will face these a lot, not just in society in general, but from the medical profession in particular. There’s a lot of data suggesting that there’s still quite a bit of implicit bias and sometimes frankly, explicit bias toward patients who are struggling with obesity. And so I think it’s important for us to recognize this. stigma, I also think it’s worth noting that often stigma arises almost as sort of a defense mechanism to mitigate some of the cognitive dissonance or anxiety we ourselves may feel with respect to certain conditions. Because when we acknowledge that certain conditions that are frequently stigmatized, whether that is obesity, whether that is substance use disorder, if we frame them as something that is a result of what we consider to be simply poor decision-making and as long as we don’t make these decisions, we will be immune to that, that’s a psychologically much more comfortable place to be than to recognize that in fact that simply a confluence of adverse circumstances might make us very susceptible to certain conditions that are that that dissonance is really what drives a lot of stigma as sort of a psychological protection mechanism. I think we can, that’s a way if we can explicitly grapple with that, we may hopefully be able to dismantle it and be able to replace perhaps some of the judgment with compassion and recognize that these patients, like all our patients, deserve care that is both compassionate and evidence-based. And, you know, along those lines, I just think it’s worth underscoring again, I’m probably preaching to the choir here, but I think it bears stating explicitly personal responsibility, while certainly important, is heavily dependent on resource availability, whether those are educational resources, financial resources, spatial resources, you know, proximity to healthy foods, proximity to opportunities to engage in physical activity, and, you know, many other different factors. And, you know, along those lines, too, the individual choices that we make, you know, this idea that we are fully the masters of our own destiny and the authors of our own story, again, that’s really, that ignores the fact that our choices are very heavily constrained and influenced by the systems in which we live and work. And so, once again, just sort of this idea of humility, that recognizing that

Speaker 2
18:38 – 18:39
there

Speaker 3
18:39 – 19:36
are a lot of factors in the background beyond our control that influence a lot of our medical conditions, in fact, and approaching this with compassion. That being said, again, I say we need to have a both compassionate and evidence-based approach Because I think, again, it’s important to recognize that compassion doesn’t mean that we don’t bring up difficult subjects for fear of having a difficult conversation, because at the same time, it’s important that we not ignore some of the evidence-based health risks of obesity. And so it’s important that we are trained and we strive to address this in a respectful and compassionate manner. So, you know, while again, it’s the compassion piece is important, also the evidence-based piece is important. And so, you know, we owe it to our patients to have what may be tough discussions in a really compassionate and evidence-based manner.

Unknown Speaker
19:38 – 19:38
Okay.

Speaker 3
19:40 – 28:22
So some of the best practices, and I will say, you know, these are what I found in my own clinical experience to be best practices. Others may feel differently. And I hope that if there are some on this webinar that may, you know, that do disagree or take a different take, that I hope we can have a robust back and forth discussion about this. I typically recommend, and again, this is as a cardiologist, it’s, I don’t see patients in a weight management clinic, so this may be different, but I see patients in, in cardiology clinics, specifically a clinic for patients who with a history of cancer who are undergoing cancer therapy. And so this is a specific population, but I, my typical practice is unless the patient specifically asks about it, I avoid bringing up excess weight at all at an initial visit. This is a chronic issue and chronic issues don’t need to be dealt with acutely. And often sort of jumping to focus on that, I think, can make the patient feel very stigmatized, even if that is not the intent. And so I will let the patient drive that discussion. And when they’re coming to see me for the first time, if they’re coming to see me for dyspnea or management of abnormal echocardiographic findings, that’s not really the right time to bring up weight. And I think, you know, not only is it unlikely to be because they’re worried about something else, but it’s also at risk of undermining an effective therapeutic relationship because they can perceive that as my not paying attention to their primary concern and rather focusing on their weight, which can feel very stigmatizing. Similarly, I think it’s really important that we recognize that overweight and obesity can cause symptoms and disease states, but at the same time, we shouldn’t prematurely exclude other potential causes. So for example, we know that obesity can lead to dyspnea and even can cause heart failure, but that it’s important to rule out a lot of the other causes as well. And I recall a patient that I saw, a relatively young woman that I saw early in my career who had been dismissed by several other clinicians who came in with dyspnea and was told that she just was out of shape and she needed to lose weight. And in fact, she had heart failure due to coronary artery disease that was readily apparent when I ordered some cardiac testing for her, but no one had done this before. And so, that’s not to say that I certainly have seen patients who come in with dyspnea and we do a full cardiac workup and everything comes back pretty normal. And then in that case, it may make sense to shift gears. But really it’s important that we don’t prematurely assume that obesity is driving all of this and that we would do an appropriate cardiac evaluation or whatever that evaluation is in your respective clinic, regardless of the patient’s weight status. Using language to convey that overweight or obesity are things that a patient has, not that a patient is, I also think is very important. You wouldn’t say that a patient is cancerous. I hope you wouldn’t, because that is almost describing something, again, that the patient is, cancer is something the patient has. And so, understanding that we’re not labeling patients as just being a manifestation of their disease, but rather their disease or their underlying condition is something that they have and that we’re going to manage together in a therapeutic partnership. I also, again, think that it’s important to emphasize the health consequences of excess weight as the focus of treatment rather than the weight itself, recognizing that again, if a patient is explicitly presenting to a clinic for weight management, that may be different, but in a lot of healthcare encounters, it may be much more effective to target those consequences, whether that is, again, cardiometabolic disease, whether I’m trying to treat, I will focus on treating high blood pressure or treating elevated cholesterol or improving glycemic control as goals rather than purely trying to drive a goal of weight loss. And I also think it’s really important that we avoid the false dichotomy of lifestyle intervention versus pharmacotherapy or surgery. I hear a lot on sort of both sides of this where, you know, I’m often asked the question sort of rhetorically by colleagues, like, do lifestyle interventions really work? And I think this is really conflating two different questions, which is, you know, do they work and can patients adhere to them in the longterm? There’s a lot of data suggesting that really comprehensive lifestyle changes can be very effective at improving cardiometabolic health, but that they’re also very difficult for patients to implement and maintain in their built environment with their financial constraints, with social constraints. And so recognizing that it’s hard, that it’s not that it’s ineffective, but it’s so very difficult with the current environmental constraints that we have, that it may not be realistic for many patients. But I think it’s also important to recognize. And so for those patients, I think it’s really important that we not view pharmacotherapy or surgical interventions as sort of a failure of lifestyle intervention, but rather recognize the limitations of lifestyle interventions within a patient’s larger context. I think it’s also important though to recognize that even if a patient is using pharmacotherapy or has undergone surgical intervention, those interventions will be more successful when they’re done in concert with at least some degree of behavioral intervention that is manageable for the patient and is attainable for the patient. I think it’s also important that we don’t sort of try to withhold pharmacotherapy or surgical intervention as a way to sort of coerce patients into making more lifestyle interventions. And it’s not for us to decide, you know, whether the patient has adequately, has demonstrated adequate effort or motivation. Because again, when we’re, it’s very difficult for us to put ourselves in their shoes. And so again, coming to patients with, from a standpoint of compassion and really viewing this as a partnership where we’re making decisions together, I think is really critical. So in the last few minutes, I’m sorry, I’m long-winded. I wanna talk a little bit just about some of the barriers to equitable access to treatment and some best practices for keeping in mind for research, is it’s important to acknowledge that new and effective treatments for the management of obesity, particularly in recent years, of course, we all talk about the GLP-1 receptor agonists. These are often prohibitively expensive for patients who stand to benefit the most. So this can just further exacerbate health equity issues. It’s also, I think, important to note that the BMI criteria that are often used, so a BMI of 30 or a BMI of 27 with cardiometabolic comorbidities, that may not be well suited to all populations. So that while that may be appropriate for individuals of European descent, for example, for individuals of Asian descent, they may actually be more likely to manifest cardiometabolic risk at a lower BMI, or in some patients, waist circumference may be more appropriate than BMI. So recognizing that there may be some inequity baked into even the measurements that we use often for definitions, either to define obesity or to define a threshold for certain obesity treatments. So it’s important that, not just on an individual clinician level, but on a public health level, that policy needs to incorporate specific plans to help mitigate inequity. So for example, this might look like mandated coverage for highest risk patients. Again, how do you define highest risk patients? This is important to have a discussion with multiple stakeholders from different specialties and likely patients to really to a robust consensus as to who are the patients at highest risk and at highest need. And also there needs to be stricter regulation of compounding and direct to consumer marketing. I recognize that, you know, this may be a more American problem, direct to consumer marketing in general is something quite rampant and can often be very problematic. it feels like there’s not a day that goes by that I don’t hear on the radio when I drive to work. Some add for some deeply discounted, compounding GLP-1 receptor agonist-like medication.

Speaker 2
28:23 – 28:23
And

Speaker 3
28:23 – 32:29
so, and this often, while they often will purport to be just trying to improve access, I think often there’s a lot of exploitation of patients who may feel very desperate to access medications that they can’t otherwise access. So again, there’s a lot of risk for exploitation there. And I think it’s also really important to recognize that we need to focus our public health efforts not only on treatment, but also on prevention. And this really needs to be done on a system-based level because as I mentioned before, lifestyle interventions when focused on an individual are often very difficult to initiate and maintain because of all of the environmental constraints that work against this. And so interventions that can help to create a less obesogenic environment in the first place, which might look like serving healthier foods in schools and hospitals, for example, subsidizing fresh fruits and vegetables, making sure the fresh fruits and vegetables are available even in normally resource poor environments, creating more opportunities for physical activity in neighborhoods that may be where that may normally be unsafe. And really just in general, harnessing tools of both classical and behavioral economics to really make healthier lifestyles, the default pattern, the pattern of least resistance. because when they are the pattern of greatest resistance as they are currently in much of the Western world, of course, people, you know, most people, except for those, you know, with really substantial educational and financial resources are not going to be able to live in the healthiest way because their environments are really pushing them in a different direction. And then finally, in just a few last few minutes, I just wanna bring up some, what I think are some of the most important ethical concerns to keep in mind for obesity research, that we have to acknowledge that patients with obesity represent a distinctly vulnerable population. This is both because of the stigma that I mentioned earlier, both societal stigma that they experience and institutional stigma that they may experience in when they’re receiving healthcare in general. And so they may already be coming from a more difficult spot and of course, obesity is associated with other social determinants of health. And so again, they may be doubly disadvantaged if they’re also dealing with other issues related to health inequity. And so for that reason, it’s important to keep in mind that patients may, patients with obesity may require additional research protections and safeguards. So, for example, and I think my colleague’s going to talk a little bit more about this area, so hopefully this will set up the next talk nicely, but it’s important to ensure that consent is truly informed. And so making sure that patients understand what the research entails and what those risks and benefits might be and recognizing that, you know, cautioning against the, or making sure that we address the therapeutic misconception that patients often carry when they enroll in research. So often patients have the idea, well, if I enroll in this research study, I’m likely to benefit. But in fact, you know, again, by definition, if there’s really equipoise in this research protocol, it’s not clear whether the intervention’s going to offer benefit or not. So it’s important that we really engage honestly with patients that we’re not sure if there is going to be a benefit, but rather the goal of this is to improve treatments for obesity down the road. And so there’s still maybe some value in that, but making sure that patients aren’t sort of inadvertently coerced into enrolling because they may feel desperate of the stigma they’ve experienced, the other social determinants of health that they’re struggling with. And they may think, well, this is my only opportunity to access treatment, but recognizing that really, research is not treatment, and it’s important that we’re really honest and clear with patients who are enrolling in research. And then finally, I think it’s just important to recognize the importance of, again, diverse stakeholder input, and particularly that, you know, the importance of community-based participatory research,

Speaker 2
32:29 – 32:30
that when

Speaker 3
32:30 – 32:57
doing research with any vulnerable populations, that we engage members of that population in research design and execution to make sure that they’re bringing to light any of our ethical blind spots with respect to what their own needs and priorities are. So thank you very much. I guess we’ll have questions at the end. I’m sorry, I went a little bit over, but I really appreciate your time today and the kind invitation to speak with you.

Speaker 1
32:57 – 33:30
– Thank you, Professor Rahal. Yes, we will have a question at hand. And now we move to the pediatric side, same topic about children with Professor Paolina Lujicka. Professor Lujicka is a professor of food studies, nutrition and dietetics at Uppsala University. And more importantly, I can say, is a co-chair of the Child Adoption Working Group of IAAS. So please, Professor Nowicka, don’t worry.

Speaker 4
33:32 – 49:10
– Hello, everyone. And thank you for the kind introduction. Do you hear me well? – Yes. – Perfect. – Yes, thank you. And I’ve just disconnected my fridge for a couple of minutes because I should buy a new fridge. It’s too noisy. And Lisa will help me to change the slides. So my name is Paulina Nowicka Today, I’ll be speaking about the ethics in pediatric obesity care and research with a special focus on how we can center the child’s needs, rights, and voices in clinical practice and research. Next slide. So building on the previous presentation that explored ethical challenges in adult obesity care, we see that many ethical principles like autonomy, combating stigma and ensuring equitable access also applies to pediatric care. However, working with children, as you know, introduces new layers of complexity. We must consider children’s developmental stages, their vulnerability and the key role parents play. These unique factors raise specific ethical questions that we must address thoughtfully. To understand these unique ethical complexities more deeply it’s crucial then to listen carefully to the experiences and perspectives of children and their families. Next slide. So increasingly there is a recognition that families and children themselves must be part of shaping obesity care. Carol and colleagues conducted a mega ethnography, synthesizing 57 qualitative studies, pulling together a wide range of experiences from children’s parents and healthcare professionals. Their work highlights what matters most to those receiving care and provides essential ethical insights. And next slide. So across different settings, families consistently call for care that is sensitive, blame-free and tailored to their realities. Children want practical advice that makes sense to them, not abstract health lectures. They also want emotional support, not judgment. Parents too emphasize the importance of involving key environments like families and schools in supporting behavior change. And next slide. Families stay engaged when they perceive tangible benefits, improvements in child’s confidence, emotional well-being and health behaviors, even if WAIF itself doesn’t change dramatically. On the other hand, logistical burdens like travel, time and costs or experiences of judgment drive families away. Importantly, successful programs celebrate small wings along the way, helping children and parents stay motivated and feel valued. Next slide. Already 11 years ago in 2014, The position statement of the EASO Child Obesity Task Force, a publication I was proud to be part of, emphasize that ethical pediatric obesity care must be grounded in the core principles of autonomy, beneficence, non-maleficence and justice. Children deserve care that supports their health, emotional wellbeing and dignity, not care that focuses narrowly on numbers, on a scale. Importantly, our publication also stressed that childhood obesity must be recognized as a chronic disease. Children living with obesity have a right to access effective and sustainable treatment just as they would for any other chronic conditions such as asthma or diabetes. This framing reminds us that effective interventions are ethical interventions and that providing treatment matter of both science and justice. Next slide. So with this background in mind, let’s now turn our attention more closely to the children’s role in pediatric obesity care. How can we involve children meaningfully, empowering them without overburdening them and protecting their psychological wellbeing at the same time? And next slide. So we know from broader pediatric healthcare research that children’s participation in decisions about their care is still far from consistent. Coy and colleagues conducted an observational study analyzing 300 real clinical situations across three pediatric hospitals in Sweden. they found that while legal frameworks like the United Nations Convention on the Rights of the Child guarantee participation rights, in practice children’s involvement depends heavily on how professionals communicate, how parents support participation and how systems are structured. Participation was strongest when healthcare professionals used child-friendly communication, meaning speaking in ways that respected child’s voices and understanding. However, barriers like time pressure and lack of training often limited real engagement, even when intentions were good. This broader evidence challenges us to reflect, are we truly listening to children in obesity care? I repeat, are we truly listening to children in obesity care? Are we creating the environments and communication styles that make it possible for children to participate meaningfully, not just in theory but in everyday practice? Next slide. So when we explored the experiences of parents whose young children were undergoing obesity we found that views on involving the child during healthcare consultation varied considerably. Some parents were strongly supportive of including the child in discussions. They felt it was important for them to hear directly from the healthcare team, not only from the parents to build understanding and trust. One mother said, “She needs to be there to listen and learn. it’s important, it has to come from a doctor. It can’t always be from mom and dad. Others, however, were deeply protective. They worried that open conversation about weight in front of the child might cause distress or damage. As one parent shared, “I find it very difficult to talk about food and weight when he, his son, is in the doctor’s office. I know he understands and it really cuts straight through the heart to see how that affects him. So this highlights a fundamental ethical tension. How do we balance a child’s right to be involved in their care, to understand and to participate with our duty to protect their emotional wellbeing, especially during sensitive discussions about weight and health. Next slide. So given this contrasting parental perspectives, some parents wanting more openness, others fearing harm, the question becomes, how should we as healthcare professionals communicate with children about weight and health in ways that is ethical, respectful, and developmentally appropriate. This means using age appropriate, non-stigmatizing language, framing discussions around healthy habits and overall wellbeing rather than weight numbers and respecting each family’s preferred communication style. Our ultimate goal must be to build trust, support autonomy and minimize any potential harm in this sensitive conversations. And next slide. So, our research also showed that parents struggle with how to talk to their children about weight. Many describe it as a balancing act. They fear saying too much, but also fear saying too little. So, healthcare professionals, we also have an ethical responsibility not only to communicate well with the child, but also to support parents in having sensitive, constructive conversations at home. Next slide. Recently, we also heard from families that stigma sometimes comes not only from society, but heartbreakingly, even within the healthcare settings. And this is not a new finding. Well, a careless comment from healthcare professionals, even if unintended, can deeply hurt a child and damage the family’s trust in care. In response to these experiences, many parents actively try to shield their children. They promoted healthcare-focused messages rather than appearance-focused one, and they work to foster the child’s self-acceptance and emotional resilience. It is ethically imperative that we, as healthcare professionals, create safe, supportive environments when children feel respected, valued, and empowered. Beyond avoiding harm, we must also actively counter stigma and equip parents with positive communication strategies that build trust and strengthen the child’s confidence. Next slide. Another important ethical priority is carefully planning the transition from pediatric to adult obesity care. Without thoughtful transition process, young people risk falling through the cracks, losing continuity of care, while setting health outcomes and facing emotional setbacks. The Italian Society of Obesity emphasize in their 2024 position paper, “Without structured support, Adolescents living with obesity may experience deterioration in their health and may even drop out of care completely. Planned, patient-centered transition help avoid these risks. They protect health gains achieved in childhood and equip young children with the skills that they need for self-management in adult care settings. So transition is not just an administrative task. It is a duty of care to support these young people as they grow. Well, as we look ahead, new opportunities and new ethical challenges are also emerging as the previous speaker name, particularly with the arrival of new pharmacological treatments for obesity. Next slide. And so today the landscape of obesity treatment is changing with the introduction of obesity medication. While these new tools bring promise and for some or many patients may be completely life-changing, they also raise important ethical questions, particularly for children, because we must reflect carefully on issues such as equitable access, long-term safety, and how to ensure that pharmacological option complement rather than replace family-centered preventive approaches. Balancing innovation with safeguarding healthy development and equity will be a key ethical challenge in the years ahead. Next slide. So throughout all these challenges, the child must remain at the center of our ethical thinking. Children are active participants, not passive recipients. Our task is to listen carefully, empower appropriately, and ensure that they are neither burdened or excluded. Next slide. So in conclusion, ethical pediatric obesity care must be child-centered, family-supported, stigma-free, and prevention-focused. It must balance innovation with caution, compassion with clarity and always, always protect the rights and dignity of the child. Before we move to discussion, let me quickly summarize the main ethical messages we have explored today. Next slide. First centering the child means carefully balancing autonomy, protection and genuine participation. Second, supporting families, especially in sensitive conversation, is an essential but often forgotten part of ethical care. Third, we must actively work to address and prevent stigma, helping to build resilience and maintain trust. We also need to plan thoughtful transitions from pediatric to adult care to safeguard young people’s health journeys. As new treatments emerge, innovation must be balanced with cautious, always protecting children’s developmental needs and rights. And finally, prevention, sustainable, meaningful prevention must stay at the heart of our efforts, even as the treatment landscape evolves. Thank you so much for your attention and I look forward to your questions and reflections. And truly, thank you for your dedication to advancing ethical child-centered care and for the important work you do every day. The final slide, the next slide, here is the main references that have informed my talk today, including key position statements and recent research. Thank you.

Speaker 1
49:13 – 49:55
Thank you, Polina. Congratulations to both our speakers today. I think that we have really together addressed the important issues with particular regard to the autonomy, the importance of the good information to ensure patients’ autonomy, and also how vulnerable is the child, the child with obesity, even when it’s the patient more than one year to participate to a clinical study. I don’t wanna waste time. I’m going to the

Speaker 2
49:55 – 49:57
chat for

Speaker 1
49:57 – 50:20
question. The first one I think is for Professor Hall. Rachel Armstrong asked if there is research available to show the long-term impact of reducing an ovarian gyneco-environment I mean, on reducing the rate of obesity?

Speaker 3
50:22 – 53:41
– So this is a great question. And, you know, obviously getting long-term data on systemic interventions in kind of, you know, certainly a randomized controlled setting is very challenging. But there are certainly examples that exist of areas, both that have historically had environments that are more health promoting and areas that have undergone changes and have had really effective results. So, you know, many of you have likely heard of the concept of blue zones. There is some controversy as to, you know, how accurate of a portrayal that is, but certainly the idea that, you know, in communities where a mostly whole food plant-based diet is the default eating pattern, where physical activity is baked into the lifestyle. It’s not something where people have to sort of actively elect to go to the gym, for example. And in fact, that’s not at all part of the culture. It’s simply that you’re walking and you’re exercising as part of the daily routine, and that’s what everyone does. And so you’re not making any special effort or any lifestyle choice per se, but rather that’s the default lifestyle that you fall into. In communities like that, they tend to see more longevity and less cardiovascular disease and some of the other cardio metabolic consequences of obesity. There also was an initiative in– let me see. It was Oklahoma City, actually. And there was actually a TED Talk with the former mayor, who recognized that rates of obesity were very high. and address some of the systemic barriers to that, really focusing on physical activity, recognizing that there was a lot of sprawl. And so improving public transit, adding sidewalks and bike lanes, and really concerted efforts on behalf of the community from a top-down approach that really sort of emphasized all the way at the level of leadership, we need to make physical activity and healthier lifestyles more of a default pattern so that’s not something people have to struggle with and actively choose, but rather it’s something that they can sort of do more naturally. And actually, collectively, there were a million pounds lost in their town. And so again, that sounds very gimmicky. And I want to be careful not to oversimplify what is a truly complex problem and also recognize that there’s a lot of political rhetoric that may start with a kernel of truth, but then sort of goes to wildly inappropriate conclusions in the modern era. But recognizing that, again, our lifestyles are more heavily influenced than I think most of us would like to admit by the context in which we live. And so if we can make improvements where the healthy choices are the default and the path of least resistance, we can really help the most people with not just treatment, but also prevention of obesity and a lot of the cardiometabolic consequences of obesity.

Speaker 1
53:43 – 53:59
– Thank you. And just to remind that also a obesogenic environment is an environment with pollutants and stuff like that. So it’s not just about having a city architecture that of course

Speaker 2
53:59 – 54:00
promote physical

Speaker 1
54:00 – 54:16
activity, but also there is this huge effort also in Europe to improve the environmental relief by reducing chemicals and toxic compounds. The second question

Speaker 2
54:16 – 54:17
is from

Speaker 1
54:17 – 54:28
Polina, from what age should children be actively involved in child-friendly communication and be active participants in obesity-disruptive practices?

Speaker 4
54:30 – 57:10
– Yeah, that’s a great question. And because this is a committee, I assume that you who work in pediatric obesity, outpatient units, you mostly meet the child and the parents together. I think this is a very common structure of how care is provided. And so you already have a child of age And as it is now, obesity in children is detected too late. Usually it takes years before the family is ready to start treatment or the treatment becomes available for the patient. So for example, in Sweden, the mean age of entering a treatment is nine. And this is how it has looked for many years now, None for boys and girls, more or less, like couple of months difference between the genders. And at this age, the child is ready to be part of a treatment, but already then we need to think what kind of words, what kind of communication style we used in the room. Having said that, I’ve spent the last 10 years of my research looking in there and the effectiveness of parent-only treatment, so treatment without children present. But these are the treatment for younger children diagnosed with obesity from the age of four. And we have good evidence to see that we don’t need to include the child in those treatments because at that time the parents are the key agents of change. But at the same time, this is what we discovered in our research on the parent-only treatment. We need to think that the communication about weight happens at home when we health care providers are not there. So we need to make sure that we also equip parents with skills how to talk about health and behavior and weight at home with their children and stigma, because those conversations are going to happen when the child gets older. So it’s a long answer for your question, but it’s a very good question. We need more research and more discussions about that.

Speaker 1
57:17 – 57:59
Even though we are running a little bit out of time, I have a question for Professor Howell. If I understood correctly, you say that researchers not care. Because this is something that raise my concern because particularly in pediatrics, clinical research is always translational research. I mean, we do clinical research to improve clinical care of our patients. So I’m wondering if you can comment on this.

Speaker 3
58:00 – 01:00:28
Yes, of course. And thank you for asking me to clarify that, because You know, research itself isn’t care, but absolutely the goal of research, of course, is to improve care. But I think too often patients can perceive, it’s important that we don’t exaggerate or overstate the potential benefits to that individual patient to enrolling in a research protocol, because if there’s really equipoise in that research study design, you know, the, of course, a study is not ethical if one, if, if there, the expectation of the intervention is that it will be so much more beneficial than the control, then it’s hard to argue that it’s even ethical to randomize patients away from the control, right? The whole point of the research is to understand, you know, we think there’s a benefit, but we don’t have enough research. So now we want to learn. And of course, if patients are enrolling in a randomized control trial, they may be randomized to a control group and then not be able to expect any benefit. Although of course, we often see that simply the fact of being more closely monitored in a healthcare system, even if they’re not receiving a treatment can sometimes benefit patients who have limited access to healthcare. So I recognize it’s complex. But my point is simply that we need to make it, we need to be careful that we’re not coercing patients into enrolling in research under the guise of, well, this is going to help you get better care. Because the goal of research is to improve care going forward on a societal level, but that may not be a reasonable expectation for every patient. It should be a reasonable expectation for every patient that they won’t be harmed by research, right? That’s a critical ethical principle, that we absolutely minimize the risk of harm to patients. And that’s of course why we have IRBs. but this idea of the therapeutic misconception that I’m going to enroll in a trial so that I have access to the best newest treatment and can expect to have a good outcome from that, that’s really overstating the potential benefit of research. So I think it’s just really important, particularly for patients who may feel quite desperate. So we see this in the oncology population as well, where patients who have exhausted all traditional approved therapies, who have aggressive cancer will often want to enroll in a trial because they think that there may be some potential

Speaker 2
01:00:28 – 01:00:29
benefit,

Speaker 3
01:00:29 – 01:01:59
which, you know, of course there may be, but by definition, if it’s a trial regimen, we don’t know yet whether there’s a benefit and what magnitude there is a benefit. Certainly there’s suggestion from earlier phase trials that there’s likely to be a benefit, but we don’t know, the risks aren’t clear. And so while it’s important to minimize those risks and try to maximize benefits, we just can’t overstate. And I’ve heard sometimes the concern, well, if we’re not careful, are patients going to even want, if we use too cautious language, is that going to dissuade patients from enrolling in research? And I would say, one, just sort of on a deontological level, like that kind of doesn’t matter. We have to be honest with patients regardless of the consequences because that’s our ethical obligation to be honest and upfront. But two, a lot of patients want to enroll in research because they want to improve care for people like them going forward. And a lot of patients, again, patients with cancer say that they hope that their disease can lead to something good for people down the road if they enroll in trials. So I think it’s important that we recognize that enrolling in trials and contributing to knowledge really gives patients a lot, helps them to feel a lot of agency like they’re contributing. And so it’s just honesty and transparency and avoiding coercion are really critical. So it’s not to say that research and care aren’t heavily related, but enrolling someone in a research trial is not the same as giving them evidence-based approved care.

Speaker 1
01:02:00 – 01:02:28
– Thanks for your clarification and the final question also to Polina, a comment about parent supports. I mean, not all the parents are best parents. sometimes they are not supportive of the treatment because of the shortness of time, shortness of interest, at least this is our experience in Italy. How to manage this situation, ethically speaking?

Speaker 4
01:02:31 – 01:05:08
Yeah, that’s a very good question. I think when working with families, for me, it helps to have a stance to think that all parents want their children’s best. But that’s not usually the case. I mean, sometimes it’s not like this. But then, as Sarah mentioned in her talk, sometimes the context can be very difficult. I think it’s the economic distress, the family distress, and I think to try to understand first what could be causing the lack of support is important. I think that it does happen that social services need to be involved. It’s something that is an option that many clinicians try to avoid, but I think there are circumstances that this needs to be the solution. But again, I’m also trying to think that when we work with children and families, what we have on our side is time. And if you want to develop a relation to the family, sometimes we need to wait, wait for them to be ready. So of course, balancing that they are not harming the child, but maybe at the time not doing their very best. And so, so again, it’s It’s patient from our side, curiosity from our side, you know, knowing that the last stance are the social services, but trying to move the family forward with a small, small, small, small step. Sometimes we need a lot of patience. So we are here because we know that child obesity treatment is very complex. It’s very difficult. We need to be so patient. And this is one of those aspects that are very emotionally difficult for clinicians as well to see that parents are sometimes not as involved as they would be. Yeah.

Speaker 1
01:05:08 – 01:05:47
Thank you for the brilliant comment. I thank you, both of you, for really great talks. I thank you all that it is. We have a final question. Can I, from the queries for Polina, can child obesity can be even improved by a better prevention and more support from the healthcare? As a mother, I do my very best, but still obesity is still there. And improvement does not come with the sports. Do you want to briefly comment on?

Speaker 4
01:05:50 – 01:07:16
So looking at the research, the earlier we start, the better results we have. And also knowing that obesity impairs metabolic health and other functioning. Anything we try to improve, and that can be any behaviour change, is beneficial. So sometimes we just need to do you know? A question you should ask a parent, if you haven’t done everything we have done so far, I mean, what would be the change? I mean, there are so many changes that already happened to a parent that the parent doesn’t see, because there is no change on the scale. So again, I think like, with selective eating or picky eating, we need to be patient and that don’t give up, keep trying. And whatever you do is better than you don’t do anything. That’s why I do believe in early prevention and treatment that we also, if we initiate changes earlier, it’s easier to have a child on board because the child is younger as well. it’s more difficult to change teenagers, but still possible. So hope, I want to give hope to stay persistent.

Speaker 1
01:07:18 – 01:07:29
– So thank you both. Thank you, Iazzo for hosting this very interesting webinar and thank you to all the attendee. And I hope to meet

Speaker 2
01:07:29 – 01:07:42
most of you in person in Malaga next month. Thank you and bye. Thank you so much. [NON-ENGLISH SPEECH]