Episode Transcript
[00:00:03] Joe: Hello everybody. Welcome to this introduction to season three of the Great Ormond Street Paediatric Bioethics podcast. My name is Joe Brierley. I'm director of the Paediatric Bioethics Centre at Great Ormond Street Hospital. I'm the host of these pods. With this third season, we've attempted to focus a bit more on how clinical ethics support to children’s medical teams, children and their parents has developed over time and focused a bit more on some of the legal issues and maybe practical issues in a more global sphere that people are thinking about in developing that support as paediatric medicine gets ever more complex. We also have some specific episodes focused at very hot, ethical topics such as organ donation and transplant in small infants, and I really hope you enjoy the season and please feedback.
They're available wherever you get your podcast from, and we'll be releasing them every two weeks. Thanks everybody.
Joe: Hello everybody. Welcome to this Great Ormond Street Paediatric Bioethics podcast and also a ELPAT ethics and psychosocial aspects of transplantation ESOT pod. We're going to share this one, and I'm delighted with the guest today, who's Farrah Raza who I have to read it out, a Stipendiary Lecturer in Public Law at Pembroke College, University of Oxford.
But we've met each other through transplants and organ donations. So welcome to the podcast.
[00:01:28] Farrah: Thank you so much, Joe, for having me, and I look forward to taking part in this podcast series and yes, very happy to do this.
[00:01:37] Joe: Excellent.
The first question we'll go with a nice open one.
Tell me about your career to date.
[00:01:44] Farrah: Okay, thank you for the introduction, as you mentioned. I'm currently based at Pembroke College, Oxford focusing on Public Law. And so I began my studies at King's College London, where I read law, and then I spent a year at Cambridge continuing my legal studies.
And then I went back after a year or so back to King's College London. Where I completed my PhD and my PhD was on the topic of law and religion, specifically on the limits of religious accommodation. I was really interested in this topic because there was a lot of the debate at that time, and obviously still today, about the meaning of secularism, equality, neutrality, and the scope of the right to freedom of religion or belief.
So I found that a very interesting topic to study and then I focused in my PhD on that particular topic. And during that period, I also taught at SOAS in London as well as at King's College, London.
[00:02:44] Joe: For those not from the UK tell us a bit about SOAS. Go into a bit of a tangent there.
What does it stand for and what do they do?
[00:02:51] Farrah: Yeah. That is the School of Oriental and African Studies at a university in London focusing on the legal systems, at least in the law school of different legal traditions. For example, I was teaching on a course the Introduction to Legal Systems of Asian Africa, and there we had had select case studies, so specific case studies from different jurisdictions covering specific issues. So let's just say in my context, I look at religious freedom, it's just looking at that particular right or particular issue in different jurisdictions. I think SOAS prides itself on diversity and looking at the law through a global lens beyond, let's say the UK or an EU law, or Europe, European focus.
[00:03:41] Joe: Interesting. So I guess that takes us nicely onto your current kind of area, adapting that more broad approach to areas of transplant medicine. And I guess for our purposes, particularly child health, we're interested in thinking about that with you, but can you tell me what your work is currently what your focus of work is on at the moment.
[00:04:00] Farrah: Yeah, so my current research interests include British public law. So in other words, the law of the Constitution and Human Rights law. As most of you will know, the UK doesn't have a codified so-called written constitution. So I think that makes it quite an interesting area of law. But I also focus on law and religion, medical law and ethics with a focus on interdisciplinary methods and, in 2020, I was awarded the Minera Fast Track Fellowship, which is one of the two female scholars selected annually by the Max Plank Society to lead a research group. And since 2020 , I’ve been head of research group at the Max Plank Institute for Social Anthropology at the law department in Halle in Germany.
And essentially that project has looked at, broadly speaking, organ donation and transplantation in England and in Germany, but with a specific focus on the duty of informed consent. And we've conducted field work at four hospital sites. The university clinic in Leipzig, the Charité in Berlin, and the Royal Free Hospital in London, and then Oxford University Hospitals. And perhaps I can go into a little bit more detail.
[00:05:19] Joe: Yeah. Super interesting. Tell us about the project, more about the research in that area, about informed consent.
[00:05:25] Farrah: So originally the project had two work streams. The first was to look at consent and decision-making processes in this particular context.
And the second was also to look at how religious, cultural, and ethical diversity, so this goes back to what you mentioned in terms of looking at the law through more broader lens, and also just asking patients in terms of when it comes to decision making, how do those personal factors influence their decision?
And we basically, have a very colourful set of results. We are currently working on analysing the data and writing up the results from those periods of field work and the study itself. But in terms of some preliminary, interesting findings, and I suppose you won't be too surprised in terms of comparing the demographics of, let's say interviewing in East Germany versus in London and in Oxford.
So I think, it does indicate to me and the research team that on the second work stream, how religious, cultural and ethical diversity is accommodated or relevant to decision making. It certainly is, and it relates back to my initial work of what does the right to religious freedom look like today?
In other words, although we might say a lot of people don't necessarily identify with a particular religion, it's very interesting to see what that category of what is an ethical belief, what does that mean to people today? And how does that influence their decision making and what are the sources of those ethics, if that makes sense. So I think there's quite, quite a bit in there.
[00:07:04] Joe: I guess where people get their personal morality from, upbringing, parents, culture, faith, it's that wonderful interplay, but in a very focused area, which is decisions about transplants, and I think that's, yeah, that, that's got to be really rich and very interesting.
Looking forward to those results. I'm going to push you along though, because I guess most of those patients were adults. Would that be fair to say?
And you're now thinking about exploring a little bit in the paediatric area. Tell me about your thoughts there. What would be interesting to find out about decision making from parents and children?
[00:07:38] Farrah: Exactly. So I think what we wanted to do is from the first phase of the research, which is focusing on adults to then develop a project and also look at complex consent cases where you've got multiple parties involved in a decision. As normally with the adult, especially in the context of let's say liver transplantation where there might be little choice, there is obviously a different dynamic as compared with children. And so as part of expanding that research project, I became interested in the complexities in relation to children and consent in transplantation. So I basically applied for some funding at Oxford with Professor Jonathan Herring, who's one of the medical lawyers there.
We were awarded the John Bell Fund Award to organise a series of workshops. So we held two experimental workshops in June and December 2024 to bring together clinicians such as yourself and lawyers, but also community and religious representatives to discuss the different kind of dimensions of consent and the challenges in practice.
So there were three themes, broadly speaking. The first focused on children's rights, autonomy, and best interests. The second theme is to look at specific clinical case studies where there have been conflicts between different parties, be that the medical team versus the patient or medical team versus the child.
And we had a very interesting example provided by, let's say, a walking, talking patient who at the time was a young adult / child, because during the course of his treatment he was a teenager and then over 18 at some point when he received the transplant.
So it was very interesting to hear from him in terms of his experience and where he disagreed with, let's say the medical team or his parent. So that was the second theme was to look at clinical case studies and conflicts. And the third was a more kind of specific theme to look at the role of religion, ethics, and culture in mediating some of the disputes where those issues may arise.
Because obviously they don't arise in every single case of conflict, but that was a more kind of specific theme. And so the aim is to hold a conference, in December and try to bring together some of the strands and the conversations we've had from the closed workshops and to also publish our findings from those workshops and the conference.
[00:10:10] Joe: Excellent. So basically, I've been one of your Petri dish experimental subjects. It's good to know. Yeah. But no that's good. So I guess the other thing I'm always interested in, and I think we haven't really explored before, but you have done some work in the area, is the idea of public health and how you persuade, maybe a population to make decisions in a certain way that never sounds as good as it ought to, but the idea of public nudging and how you might, try and make people think about consenting to organ donation or to have vaccinations which are evidence based as safe and effective at protecting people from very serious diseases.
So I wonder, could you take us there, your thoughts about. Different ways of public health interventions and the law behind it, if you could.
[00:10:59] Farrah: Yeah, so I think it's a really important, huge topic. And perhaps if I may take a step back before I answer the question, specifically.
Okay. Just to start with the first principles. As we know, there's a lot of debate about consent and the role of consent, and that in public debates. So I've obviously been working on the legal and ethical dimensions of consent, but we also know that there's a lot of debate, let's say in particular with regard to sexual offenses.
When did someone consent, what is valid consent, etc. So we see those debates in, criminal law and criminal law cases. And we also see those discussions, obviously in the medical and healthcare context. So in some of my research and work, I go back to some of the first principles and in a recent article in entitled, and this is just a short title, ‘Strong and Weak Consent - What does consent mean?’. So we look at the justifications and forms of consent and, let's just run through very quickly four broad categories. So we might say the first is explicit consent, and this is where somebody states in a kind of active and clear way that they agree to something. And you basically have the evidence to support that consent.
Second category you'd say is implied consent. And this is where it might get a little bit more confusing because there might be mistakes made about that, right? So someone might say, oh, I thought they were consenting, or I implied that there was consent because of, circumstances or act X, Y, Z.
But it might turn out that actually. There wasn't actually consent. And so implied consent can be a more sort of confusing category, but in many ways, we imply consent every day when we go onto the tube and we consent to let's just say light non-sexual touching, if you are in a busy crowded tube you can assume that you are end up going to brush on other people when you are in that very busy crowded tube. And please note I mentioned non-sexual touching in that context. But we do imply consent and give implied consent in a range of daily situations. But as I mentioned, the ethical challenge there is when there was a mistake as to consent and therefore there are some ethical dilemmas around the concept of implied consent. The third category is presumed consent. And we've seen this in the context of deemed consent and organ donation in the UK. With now all four nations implementing deemed consent, or in other words, ‘opt-out’ consent systems. And here again you might say, or some people might argue that, the best form of consent is explicit consent, where there's evidence and there's no ambiguity. And others might say in the public health context, we have this really important goal to increase the availability of organs donated organs, and
we think that the public largely supports this, but a lot of people don't get around to actively registering their intention. And therefore it might be justifiable, ethically justifiable to have this presumption. And then you can always opt out. So you can always say, actually I don't agree with this, but it essentially switches the burden or places the burden onto the average person rather than, let's say, the other way around. And in some countries, so there was a recent debate in Germany about changing their deemed consent law laws. I'm sure you're aware of that debate. And it was agreed that Germany, at this time, doesn't want to adopt the same kind of deemed consent opt-out system in the context of organ donation. But perhaps that clinicians might have a greater role in just reminding patients in different ways to perhaps softly encourage them or make them think about organ donation.
And so I hope that sort of helps to highlight the complexities of consent because for some, the only ethically defensible form of consent is explicit consent. It's clear, there's evidence, there's no ambiguity. But for others, there are a range of situations where we might use different kinds of consent because it is ethically justifiable and we're trying to pursue a social goal that's really important.
[00:15:38] Joe: Excellent. I guess in paediatrics it's still fully informed consent from parents for organ donation but coming across deemed consent and issues like other variations in that, often in paediatric research that's most familiar to people. So the idea that you may have, deferred consent is probably the most familiar to people outside the fully informed consent in a clinical study when, we published a paper on this some time ago, there may be like a situational incapacity where it really is impossible to have someone give properly, fully informed consent.
So randomisation, for instance, can happen after a, a formal ethics review. Scientific assessment of the study and it fully goes through all the permissions, but consent from the parents is done after the intervention happens in the next few days and becomes effectively permission to keep someone in the study and retain data.
So I think that's most familiar to people in paediatrics whereas the other aspects will be a little bit less familiar. But I guess, the other question then gets to be how do you try and nudge people towards that idea? You want to get them to do any thoughts on that? Because I'm really fascinated in that.
[00:16:48] Farrah: And those are really good points. And I think that goes to the fourth category of proxy consent, where you have somebody essentially making the decision for you. Now, medical law has a range of, sort of, techniques and situations where this might be possible. But I think you raised an interesting question, which is going back to your question of, why children and transplantation and it's partly because although children have autonomy, that autonomy is somewhat limited.
And I think that makes it a very interesting case study. And I think you're right to point out the legal framework and the distinction between. Transplanting into a child, and the child is a deceased donor and the child is a living donor. So we've got different set of legal rules for that. But I think what's interesting particularly about children transplantation, and then I'll go back to the nudging aspect and reason why I wanted to expand research and the project into that field is there's been an increased emphasis on the right to participation and the right to an open future. And also political pressures towards protecting children, especially in terms of, online harms etc. So all of those wider debates, I think feed into either directly or indirectly, into debates about consent and children's autonomy and how we interpret best interests and who should make a decision.
So I think one of those interesting points that we discussed Joe, in our workshops, and you probably will remember this, was the difference between, English law and German law in terms of if you need parental consent in German law, you need the consent of both parents. So they both have to agree. And that's not necessarily the case in English law. And I think that was an interesting comparison. And so it's also an ethical question, isn't it? Is it okay to basically override or overrule one parent or do you really, need the joint agreement? So I think some of those debates are the background debates are why I think this case study is really interesting. And I don’t know what your thoughts are on that. Before I go on back to the nudging question.
[00:19:00] Joe: Yeah I think, well, practically, ethical cases and also difficult cases, innovative therapy, we very much move to where you really need to have consent from both parents for that sort of intervention where it's not straightforward medical consent to an operation that's very straightforward, but things like a transplant or other things, it's very much the case that despite, the law saying you need permission or the consent of one person with parental responsibility, clinical practice involves making sure everybody who has parental responsibilities informed and agree to what's going on. So there's slight difference there between what's strictly necessary by law and clinical practice. I think.
And I, we are, big fans of Joel Feinberg on this podcast the open future. We've encountered throughout lots of our ethical concepts about children and young people, and thinking about, trying to minimise restrictions on their future, as part of decision making, obviously can't always be achieved, but I think it is very important to always consider that.
So great. I'm going to nudge you to get onto nudging. Do you see what I did there? Yeah.
[00:20:08] Farrah: Yes, I did. I did. That's a very good one. So going back to nudging. So let's start off with first trying to define what nudging means, and essentially, in very broad terms, nudging is about influencing choices or the choice that somebody might make in relation to, say their medical care. Now nudging is used in a number of fields and there's a lot of literature about the ethics of nudging more generally, but of course we focusing on the medical context.
So one of the key questions in this context is whether it's ethical for healthcare professionals to try to influence patients towards consenting to the option that the healthcare professional thinks is the best option. And so on the one hand, there is an argument that as long as patients retain the choice to make a decision, trying to influence that choice is not necessarily unethical.
And then on the other hand, there are those who argue that, nudging and different forms of nudging can essentially amount to manipulation and are problematic because they could either be paternalistic, which means deciding what a healthcare professional thinks is in the best interests of the patient. And those who reject paternalistic approaches to decision making would argue that nudging should not be permitted. And the second objection about manipulation essentially refers to the point that in order to nudge a patient or a person, the way in which the question is framed, can undermine the autonomy of the patient because it sets the framework. So there is an intention to influence. Now, there might be others who argue it all depends on how this is done, how the strategy of nudging is actually implemented in practice and whether there are safeguards and those who argue that not all forms of nudging amount to manipulation or paternalism would defend nudging on the grounds that there is still free choice for patients. And actually sometimes influencing someone to make a good decision, however that might be defined, is not unethical. And so there are a range of views on, what counts as nudging and what counts as patient autonomy because some of these are open-ended principles and how do we measure patient autonomy?
So I think those are really complex concepts and obviously they have very practical consequences, and we are looking forward to exploring this theme and the ethics of nudging in an upcoming seminar as part of the GOS lecture series. I really look forward to going to a lot more detail on that topic.
So obviously as you pointed out, there are different views in terms of the ethics of nudging and how to even define nudging. So some might argue that nudging is inconsistent with or undermines informed consent. If we say informed consent is the gold standard to what we should be working towards because it's about patient autonomy or the person's autonomy. So we want to make sure that they're informed. Now, of course, we'd have to slightly amend that in the context of children and think of Gillick competence and the standard of to what extent with the information and the risk disclosure. But just in the general sense the debate around informed consent being the kind of the key benchmark or the gold standard.
So nudging. What is nudging.
So there are different ways of defining nudging, but essentially you might say you could put it onto to a scale but essentially it might be where Party A seeks to either influence or, and in some people's view, manipulate the view of Party B. And so the debate is around the ethics of what kind of nudges or what kinds of, or what forms of nudging are considered to be unethical or undermine patient autonomy or somebody's autonomy.
And so there are 2 ways there might be one is how a question is framed or how something is framed. The question also of whether a recommendation in the clinical context is actually nudging, because on the one hand, we go to medical experts and clinicians for their expert view.
So we wouldn't want to say that clinicians are, constantly trying to nudge us and undermine our autonomy because that wouldn't really make much sense because we rely on their expert opinion and their expertise. On the other hand, in some areas where, let's say the treatment options are not so clear, is it ethical for a medical or healthcare professional to, let's say, nudge person B?
Some might say it all depends, doesn’t it? It depends on the framing, it depends on the conditions. Does patient or person B retain their autonomy? And do they have the capacity to decide between different options? I don't know how convincing you might find the application of nudging to, let's say, deemed consent organ donation. So some might say this is, more than just nudging because it changes the presumption. But it certainly gets you to think about are you comfortable with donating your organs? And if you're not, you're going to have to actively opt-out. And so that might be considered as a form of nudging.
I have somewhat simplified or oversimplified some of the complex debates, but that's the sort of the key points I think. In that field in terms of to what extent should you be able to influence or encourage, and what is the distinction between encouraging, influencing and manipulation?
[00:26:43] Joe: So in some ways the interesting point is whether someone is actually aware they're being nudged? You fully inform them there's nudging going on, in which case, what's the concern? And the second is, I think there's a challenge here in that the idea that something like organ transplantation is morally neutral, comes into this. It's not. It's clearly a morally good thing to do to help people. Few would disagree with that. The idea that this is a neutral undertaking and people should just have the idea to have an abstract, X, Y, Z, why don't you choose whatever you want to do? I do sometimes struggle with that on a personal level, that this is not a neutral undertaking. You are stopping other people dying by virtue of your choices here. It should still be your choice, in my view, but you also need to understand the implications of your choice, and I think we're not always good at doing that. We don't really go to that next level. And this is not something I do because in the UK for instance, we have specifically trained people who request organ donation.
But the idea that it's a neutral undertaking and it's completely up to the patient to say yes no to this. But surely, they must understand the implications of their decision. I don't even think that is nudging. I think that's just, yeah, informing people fully about the situation. So that's my take on it anyway.
[00:28:00] Farrah: And I agree. And I would also say not all forms of nudging would necessarily in and of themselves be unethical. You might be able to place it on a scale and say some forms might be somewhat questionable. And perhaps, different theorists and practitioners might think of nudging and the distinction between as you rightly mentioned, if you are informing a patient that can't necessarily be equated with nudging. I suppose it depends on, how it's done and some contextual factors. But I think that's right. I think merely informing a patient is not necessarily nudging them. There's a very good article in summary by William Simkulet in, a paper in 2017 on nudging, which kind of summarises those different arguments. And I think one of the key points, which, as I've just mentioned, is maybe to look at this on a scale. So we might want to amend our approach depending on what kind of values and interests are at stake. I think that obviously requires tailoring rather than a kind of broad-brush approach.
So I was just setting out some of the broad debates or, concerns about nudging or for and against nudging. But I agree that I think it has to be contextualised and tailored to the specific circumstances in order for us to evaluate whether that is justifiable or not.
[00:29:24] Joe: So we're heading towards the end of the podcast excitingly.
But a little bird tells me you're keen to be an author, but not Rza's, textbook of Tort. Tell me what are your thoughts? You want to write a book, or is this very much in the kind of formative phase at the moment?
[00:29:40] Farrah: Firstly, I wonder who that bird is.
[00:29:42] Joe: I couldn't imagine.
[00:29:45] Farrah: I'll say a little bit first about, my book, which is entitled ‘Religious Accommodation and Its Limits’, and essentially that is based on my PhD, so what I mentioned earlier on. And in my book, I offer a sort of model for religious accommodation. So on what grounds should religious accommodation be limited? And when do religious claims harm the autonomy of others? So I set out a typology of harm to the autonomy of others, or try to define that or somewhat define that. And I drawn a range of case study examples from, jurisdiction in the US, Canada, European Court of Human Rights, UK, Germany, and France. That's my first book which was published in 2023. But I'm definitely open to something more experimental and yeah going forward, I have some ideas, but very much in the early stages.
[00:30:37] Joe: I know I'm being very mean. We have talked about it in the abstract, but anyway, good stuff. Maybe to finish off, where do you see your career going from here? Do you think, you've obviously got a lot of stuff you've already done at a young age, dare I say, but your career maybe, can you keep being such a polymath as you go forward? Or do you see yourself going into more academic law, applied law or practical healthcare stuff, or where you take silk, I think it's called, I'm only a medic. I don't understand these terms, but you know where do you see yourself ending up?
[00:31:08] Farrah: Firstly, I think one of the most interesting parts of my current research project has been to use socio-legal research methods. So essentially looking at the gap between what the law is and clinical practice. And I think you mentioned that earlier on, and I think that's really important for lawyers to keep an eye on actually what happens in practice in context, X, Y, Z so originally my PhD was, focusing on doctrinal legal methods, and the postdoctoral phase was focusing on actually looking at how is the law understood by the relevant parties and actors, and in this case, patients and clinicians and healthcare professionals. So I definitely see my research developing in that area as we've already discussed, especially in the context of children and transplantation.
I am a non-practicing barrister at the moment, and yes, I remain very interested in looking at how the law works in practice, so I think it will be trying to combine and pull together those different strands going forward.
[00:32:13] Joe: Excellent. Farrah, thank you so much. That's been super interesting with lots of ideas for people to think about and it's great to hear you are interested in developing the law in Transplant and that applied to children, particularly for us on this podcast.
So thank you very much for your time.
[00:32:31] Farrah: Thank you so much for interviewing me and I very much look forward to working together in terms of the upcoming conference and our publications. Thank you so much. Okay,
[00:32:41] Joe: Thanks everybody. This is the latest episode of the Great Ormond Street Paediatric Bioethics Podcast.
My name is Joe Brierley and I've been your host. Thank you very much. Bye.
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