 Hello to our viewers. My name is Diana Alame. I'm a master's of biothic students here at the Center of Bioethics at Harvard Medical School. The video you are now seeing is accompanied by an article in our very first publication of our new journal, Coming Out of the Center, that we are very excited about. In this journal, we hope to discuss not only important matters in medicine, science, and technology that have bioethical implications. But we also want to highlight the tremendous work that members of our community do on a daily basis. And one phenomenal member of our team is Amy Doxer-Marcus, a second year student in the master of bioethics program at HMS. She's a classmate of mine with numerous accolades. And I'm happy that she has joined us today. Amy, you're a well-respected journalist currently at the Wall Street Journal. And you began your career in the late 1980s. You covered a variety of topics, but you ultimately landed on passionately illuminating the experiences and concerns of patients and their families who are suffering with rare diseases. And this particular area of your work has received a number of recognitions, including the Pulitzer Prize. And so this career of yours really reflects a passionate drive. So what is the source of this passion? How did you end up doing this work? I've always been interested in the intersection of science with society. And I see that there in the past years there's really been a turning point. Patients and their families are increasingly seeking out ways to produce scientific knowledge, not solely to be consumers of it. Part of it reflects the fact that particularly with rare diseases, there aren't effective therapies for so many conditions. There's just nothing available. And there's not as much interest in developing such therapies. Pharmaceutical companies may not be interested because the market is small. Academic researchers may not see an avenue to publishing papers or winning grants. And so patients increasingly find themselves having to do it on their own and to collaborate more closely with the medical establishment. And I've tried very hard to chronicle that movement. Yeah, and I think you've spoken about a lot of the people that you cover and the community behind them have reached out to you and have told you how meaningful the work that you're doing is to them. And I would argue probably to society at large. How do you feel about that? Do they reach out a lot after and before? Do you get a lot of responses? Is your email box always full, Amy? I think email box is for all reporters as well. And I think that that is part of the mission of journalists is to try to reflect trends that are happening within the society and to draw attention to people whose voices aren't often heard. I think patients often feel that they don't really know how to maneuver through the system. We've studied a lot in our classes, as you know, that often patients don't even know how to ask the question that they want to ask. They don't even know what the right question might be. And that is such an important thing is to be able to give them knowledge so that they can ask the right question, get the answers they need to make an informed decision. And there's obvious direct merit to the folks that you cover who are suffering from a rare disease. But what is it to the rest of society? Why should they listen? Why should they read? Why should they reach out and learn maybe something that's not going to affect them or anyone around them? One of the things I've learned from my work reporting on patient communities is the fact that the one thing that we all know is eventually we're all gonna be patients. We may not be a patient now, but all of us will be patients, whether we're a scientist, whether we're a reporter, whether we're a doctor, eventually someone we love or ourselves we're patients. And so I think it's vital to realize that all of us have a stake in improving this process. We're all part of it. We all wanna see a positive outcome. And I think there are a variety of trends happening within society that allow us and even require us to play a larger role in working with scientists and doctors to ensure better health outcomes. So you see it more as a partnership. We all have a stake in the game. Is that fair to say? Very much so. I do see this as a partnership. It's something that I've thought about a lot. There have been some phenomenon, for instance, the rise of the internet. The ability to go online and even order scientific kits or DNA sequencer for a relatively small amount of money. You can do science now outside of a lab, but many of the patients I speak with, it's not that they wanna do this at home, they don't. But they do want to play a greater role. For a long time, patient advocacy groups have provided a very important source of income. They raise funds to help direct research or get trials going or help move drugs further down the line. But it's not just about that. They don't wanna only be a source of blood and tissue. They don't wanna just be a body that enrolls in a clinical trial. They don't wanna just contribute money. They wanna be a decision maker. They wanna help identify and prioritize what drugs should we be doing first? How should we design the trial? Can we co-analyze the data? Can we co-author the paper that comes out? There's a lot of really innovative thinking that's going on. I've tried to chronicle it and I'm eager as part of the program to study it as well. Right, so this might be very difficult for people working on these issues as scientists or investigators or physicians and so on to embrace that sort of collaboration. Do you think there might be some pushback or is there a new wave that we should know about people wanting to collaborate and maybe break the model a little bit? I think anytime you have an idea that's new and even potentially uncomfortable and requiring of new thinking, there are gonna be people who push back or feel less comfortable. But from my reporting and from the work that I've done the past year as part of this program, I think that there is an enormous interest in finding new ways to do this. I think people are eager to do it but part of what is happening now is the beginning of a conversation on how to do this more effectively. It requires new thinking. There are protections in place, institutional review boards, HIPAA regulations. All of these things arose for a reason and many times for a very, very good reason. We wanna make sure that people who often are in a less powerful position or coming, intersecting for the first time with a medical community or coming when they're at their most vulnerable because they're sick. I mean, we want to make sure that they're protected but I do think that it is coming from the patient community that they want to have their values expressed. They wanna have their desires and needs met and they wanna think about health and science in a new way and I think frequently the most interesting stories I do are the ones where they are met by a scientist or by a doctor or by an academic who thinks to himself or herself, yes, there is a different way of doing this and yes, I'd like to think a little bit more about how to make sure that all of our values are met. So we've mentioned the program here a bit, the master in bioethics at the center of bioethics at Harvard Medical School and you and I have been classmates for over a year and a half now and before precisely verbalizing the reasons for it, I think we've been drawn together in a deep friendship now. So in addition to this instinctive bond that you and I have formed, we also share a common professional interest of sorts and that interest would be to ensure a wider discourse and inclusion issues really that, on issues that affect us all. So the question here specifically is what led you to pursue a degree in bioethics, a graduate degree here at the medical school and how have your prior experiences in turn shaped your view on the role of bioethics or the role of bioethicists? Well, as I delved into this topic of this phenomenon that I was noting of patients wanting to be greater participants in the production of scientific knowledge and in their collaboration with scientists and doctors, I often saw that many of the issues in which they disagreed or had some source of tension involved ethical issues. People had a different sense of how they would prioritize their ethical values. And as a result, there were moral tensions that arose in these collaborations. I became intrigued by them. How did they arise? How can we solve them? And I noticed that frequently the two different sides, it's not that they disagreed, it's just that often they were speaking a different language. I wanted to better understand the academic language of bioethics, the canon of bioethics, so that I could almost find a bridge between the two and help explain to each side how each of them spoke, how they saw their framework, and the hopes that eventually we could work together to try to create a common framework. You know, that's really interesting. I think you and I also shared this interest in terms of the power of language. And in the program, we talk a lot about, you know, we have principles, right? But how do you weigh and balance them? When does one principle, this one ethical principle, maybe take a little bit more prominence in this specific situation? And when you're dealing with a topic such as one's health or one's well-being, and you have a relationship, either a power dynamic between a physician-patient or a researcher and participant, and so on, there's a language bridge, would you agree? Where we know that, you know, professionals working on a topic have a specific idea of what is valuable or should be valuable, but then you have those interested parties that want to contribute to the discourse. So it's very interesting. I think we've learned a lot, would you agree in this program about weighing those values? I definitely agree that the program has emphasized learning about what the values are and how to articulate them. I think that the issue that I often struggle with, and I think that we often discuss, is how do we talk about these values in a way that anyone can participate in the discussion? Because I think that what gets articulated when we start to analyze this are feelings and intuitions and even principles that all of us share. These aren't principles that come out of nowhere. They well up from the deepest humanity that we all share. But I think that those of us who aren't in the medical world professionally and aren't aware of bioethics as a profession, we talk about those things, but we may talk about them in a different way. We may not know what the names of those specific principles are or how to differentiate them. We have a lot of intuitions and we know what we feel, but we often have a hard time articulating them. As part of the program, we also read a lot of academic literature. And that's been a very interesting experience for me because many times I find that the language that's used in academic literature is a language that almost sets up a kind of wall between people who aren't immersed in that field. And one of the things that I've given a lot of thought to is is there a way to create a hybrid voice? One that will bridge some of the kind of traditional academic language that's more formalistic, more structured, uses a kind of vocabulary that maybe people aren't as familiar with with let's say the language of journalism, which maybe is more informal, more vernacular, more everyday. Is there a way that we can come together and create a common narrative, a common language that we can all almost create together? I don't wanna see doctors become, let's say patients or patients become doctors. I don't want people who are inside the medical and academic and scientific establishment to think that people who are patients have to adopt their framework or vice versa. And what I most definitely don't wanna do is see patients going off and creating a framework that's separate and doctors and researchers and scientists creating a separate framework. Rather, I want us to come together and try to figure out a way to craft a framework together. Right, and earlier you talked about an intersection. And I think that I can confidently speak on the collective behalf of our classmates, especially as last year we started the journey together when the program at its first inception. You helped shape part of that learning experience, I must say, in class discussions. You helped bring awareness to that common narrative that we can actually achieve when we discuss these matters. So in this journal, when I proposed making this my capstone experience, which as you know is an integral part of the experience here where you do an applied work as part of your coursework so that you have direct experience. And that's been very valuable. I approached the leaders of the program and it was supported enthusiastically. And one of the ideas behind this journal was to bridge that academic and more journalistic narrative and bring the two together into a common narrative. And I have to say that you've had quite a bit of influence on me in thinking this through. So we've talked about inclusion, we've talked about intersection, we've talked about a common narrative, we've talked about weighing and balancing different values and perspectives. Now, for those who like you are seeking maybe more formal study in bioethics, is there a piece of advice that you would give to those folks? I think that one of the things I've appreciated most about my experience in the program is the diversity of it. It's really, it's a meeting place. The classroom should be a meeting place for people who have different life experiences, different backgrounds, different professions. All of us contribute to thinking. One of the things I sought was, I wanted people to challenge me about my perspective and my ideas and I wanted to challenge other people. I wanted to think about how we can advance the conversation. And I was so touched and moved that everybody I've encountered in this program really shares a similar goal. I think that bioethics to me, I like to think of it almost as a kind of stage. We're all standing, we're like players at the beginning of a play standing on the stage and each of us sometimes is in the darkness and then sometimes each of us steps forward and the light shines on us. We get a chance to say what we're thinking, what we feel, what we believe and then we step back and the next person steps forward. And in the end, I think the goal is not everybody should say the same thing but I think what we're searching for in bioethics is coherence, kind of a narrative coherence. I'm not trying to persuade you and you're not trying to persuade me. Rather, we're going to listen to each other, ask questions and search for the common narrative within these diverse groups and diverse voices. Have you seen your own professional work affected by what you've learned here from the program and from your interaction with faculty and students? Of course, I think that you can't help but be changed by every kind of experience and we always bring ourselves to whatever we do. I think I see more the how much all of medicine really is built on bioethical questions, tensions and diversity of viewpoints. I think one thing that journalism shares deeply with bioethics is a firm belief in the need to ask questions. That's very good and so what would you say would be some of the concrete steps that we can take as learners of bioethics where we can have a more inclusive stance? I think it's always important to search out the people who aren't in the room. There are people who get access more or even know how to get themselves into the room to tell their stories. I think it's incumbent on all of us, whatever our profession is, whatever our role is, if we wanna have a more inclusive bioethics, I think we wanna search out as many stories as we can, make sure that everybody gets a chance to tell their story and that we are able to learn from one another. And that's very interesting because in your own work, covering those folks who have rarer diseases and other issues, they need a forum you felt. Is that true? They don't necessarily have otherwise other access. They turn to social media, they look for groups that they can form a bond with and here you are, you help set their narrative in a more prominent format. I think that there are many ways to tell a narrative and many forums. I'm not sure I necessarily think that one forum is better than another one. I think that people want to tell their story. All of us, I really firmly believe in the importance of storytelling. I think that it's actually one of our most basic desires as human beings. I mean, pretty much after we probably found fire, we sat around the campfire and told each other stories. So I think that's what people are looking for, whether they do it in a format of social media, whether they do it in a newspaper, whether they do it just talking to their friends. There's so many ways for us to have conversations and I think all of them are important for us to feel that we have someone who listens to us and that we have a way to express ourselves. What do you think though are some of the barriers to such inclusion and listening to a variety of voices that you've encountered either professionally or what you've seen otherwise? I think when you're a patient, you don't feel well. I mean, that is the essence of being a patient and so you don't really don't have as much energy as you might have if you were feeling healthy to advocate for yourself, to figure out a system. You wanna feel better. You find yourself many times you don't understand how a hospital works, you don't understand how the medical system works. Healthcare is a very complex system. So I think that is a barrier. We need advocates, we need someone in the room who can sort of understand what the question is to ask and help us navigate and I think that all of us in sort of the bioethics community and beyond are searching out for ways to make that process more comprehensive to anyone who encounters it. Right, and so we've both encountered folks who clearly do bioethical work. They've incorporated it quite successfully into their careers yet they hesitate to call themselves bioethicists. Why do you think there is a hesitation to call oneself an ethicist? Would you go out now after you've graduated here as a reporter and call yourself a reporter and a bioethicist? I don't think so only because my professional identity is reporter but I do see myself as someone who has a passion for bioethics and I will continue to have that passion and find ways to bridge the narrative divide but I do think that there is hesitation. We've had people who've come in and given us lectures and spoken to us and they are very wise in an understanding of bioethics. They've read all the books, they lecture on it, they write about it and yet hesitate to call themselves a bioethicist. I think part of it is just the word. I think all of us hesitate to call ourselves an ethicist because I think it implies somehow that we're saying that we're ethical or more ethical than other people and I think that involves a judgment that many of us don't feel comfortable making either about ourselves or about other people and that's fine. I don't, one of the things I learned is that as part of our studies is that you don't have to categorize things, you don't have to call it something, you can discuss it, you can find different words or different ways to communicate. It's not so important to call yourself one thing or another. I think what we want to sort of put forth is that all of us are a member of this community. We all have a role to play in discussing the best way forward and how to make decisions that do the greatest good and also allow each of us to feel that we're at least getting something that we want to achieve from our goals. I think we can pretty much agree that now is a great time perhaps for bioethics and for bioethical discussions. It's the time perhaps is ripe to demand and ensure more inclusiveness, especially perhaps with an undercurrent in our society that sets up some barriers to that. So there's a lot of energy, a lot of forward momentum. Do you see that in your own work? Do you feel like there's a forward momentum in including voices that perhaps wouldn't otherwise be heard, those who suffer from rare diseases and otherwise? I think for many years people have been discussing the democratization of science and I do think that there are trends that have contributed to that. Everything from the rise of the internet and the ability to use social media, the ability to contact people who are all around the world that you might not have been able to connect with. I think that trend will continue and I think that there is recognition by funding agencies and people in the establishment of medicine that we do need to find better ways to reach out to patients to make them part of the discussion. We don't have an infinite number of resources. There are many pressing needs. Budgets aren't expanding. Oftentimes they're shrinking and we're gonna often have to make hard decisions and we can only make those decisions together. I think that is the message that we're seeing and that in order to do that, if we're gonna start to bring people from different backgrounds together who have different goals and different ways of articulating those goals, we are gonna have to find a common language so that we can communicate with one another. That's right. Thank you so much, Amy. Thank you for being here and thank you to our viewers. We hope that you remain in touch and be a part of our community and tap into our journal. Thank you so much. Thank you.