An Interview with Emma J. Kagel, JD, MBE, HCE-C

by Gordon Nary

Gordon: Please tell us one of your favorite childhood memories.

Emma: Oh wow, not an easy question. I have so many favorite memories as a child. I think the themes are the most important in answering your question – they involved family – my immediate family along with extended family. I feel a tremendous sense of warmth, pride, and joy when I remember moments whether it be being read to by my father outside on our porch or in our sunroom, learning to speak at Cincinnati Zoo sometimes clutching a Raggedy Anne doll and a red and white homemade quilt in my stroller, walking alongside my mother as we went out for activities or to the pool knowing she was making sure I understood my surroundings and was fully prepared to enjoy the activity, trips up to NYC to visit my grandparents and each of their consistent efforts to make sure I felt loved and able, trips to Ohio to visit my other set of grandparents and their pride when they visited my school for grandparents day, those moments with my sister whether playing fashion design or making bracelets on a hot pavement by the pool. I also remember distinctive events that happened to me that were transforming to myself, each of my family members, and our family dynamic. For example, after my cochlear implant was first turned on in NYC my mother took me to Bloomingdale’s for lunch. Along the way I marveled by all the sounds whether it was birds chirping or car brakes. And just as she had patiently taught me sound recognition and appropriate engagement with sounds in my formative years, she patiently did the same for me as a teenager. Even though she was not quite able to mask her disbelief that her adolescent daughter was sitting across from her and publically smacking her silverware together, amazed by the sounds. My favorite memories have to do with how I integrated with my loved ones in a meaningful way to them as well as to myself.

Gordon: When did you attend Connecticut College, what degree did you earn, what was your favorite course, and why was that course your favorite

Emma: I attended Connecticut College from 2021-2005 and received a BA. My major was a self-designed interdisciplinary major in Bioethics which was sponsored by the Philosophy department. I also received a minor in Government. What was unique about my major was that it allowed me to explore many programs of study and apply the materials in specialized form to my major. For example, I took courses in Anthropology, Sociology, Religious Studies, and Psychology to better understand how individuals and social frameworks derive their ethical values and respond to discourse and mediation of ethical conflicts. I took courses in Philosophy like “Philosophy of Time” and “Philosophy of Art” and applied the materials to bioethical challenges. For example, I did a project on the aesthetics of hospital architecture and design on patient experience and conflict. I did another on how our understanding of time and meaning of life interplays with healthcare decision-making. The liberal arts approach to my undergraduate education was invaluable to my exploring and developing skills to be a bioethicist. My understanding of government supported my appreciation of the realities of translating theory to practice of bioethics, in our larger global world.

Gordon: When did you attend University of Washington School of Law, what degree did you earn, who was your favorite teacher, and why was that teacher your favorite?

Emma: I attended Washington-Seattle from 2005-2008. Those three years in the program were originally to be part of a joint-degree JD-PhD Bioethics admission; however the PhD joint degree option ceased during my time at UW-Seattle (housing crisis/recession/governmental agendas). I received a Juris Doctorate. I cannot speak to one professor being my favorite – I had many from Contracts, Criminal Law, Family and Juvenile Law – and administrators who positively impacted my education. Law school was always to help me better understand the environment and stakeholders in which Bioethics operates, to develop stronger communication and writing skills, and to be taken seriously by colleagues especially in medicine where power differentials are very real. When I was in law school I briefly considered shifting away from Bioethics and pursuing a career in Juvenile law and contributing to the development of specialized courts for juvenile matters. But ultimately I was reminded being a lawyer, in the traditional sense, was not my passion and thus, I presumed it would not ultimately be a fulfilling career for me.

Gordon: What initially interested you in pursuing a career in Bioethics?

Emma: Like most who get into any discipline of medicine, I am driven by the combination of my drive for stewardship, compassion, and my own personal experiences in healthcare. I received my first cochlear implant as part of the Cochlear Americas clinical trial in the mid-90s at Lenox Hill Hospital (Dr. Simon Parsier with Drs. Pat Chute and Amy Popp). At the time Dolly the Sheep was cloned and there were novel developments in regeneration of embryonic cells. I didn’t have to look far to understand what Dr. Amy Guttman (Chair of Presidential Commission for the Study of Bioethical Issues) meant when she said something to the effect of ‘you should care about bioethics because bioethics cares about you’ when emphasizing that we play a large role in moving scientific progress forward. And that each of us and our narrative stories about how our values interchanged with research and clinical encounters informs progress on an extremely fundamental level.  It is so easy to lose sight of the impact that individuals have in scientific progress — it appears so much bigger than each of ourselves but alas, progress is heavily reliant on each and every individual who truly has the power to effect change.

For a long time I resisted any association that I specialized in disability ethics and advocacy in bioethical practice. I resisted this association because I did not want to contribute to the misunderstanding that bioethics is patient experience, compliance, or specific to populations who most often face obstacles in clinical care. Bioethics affects everyone - the richest, the healthiest, the most intelligent, etc. It affects people on the most fundamental level because it is about tensions in values especially in the face of challenging situations that most already think won’t happen to them or only happens to the unfortunate whether because of socioeconomics, disability or poor health/genetics, or bad luck. Of course that’s after the dynamic has been judged thoroughly for whether the person created or contributed to their situation rendering it avoidable by way of ‘better’ decision-making. In fact a skilled bioethicist is immediately teasing out what role self-awareness, grief, and bias has in the perceived value conflict they are called to mediate and counsel all stakeholders through. A ‘looks like but it ain’t’ bioethics case includes those that the patient and/or their loved ones are experiencing shell-shock that they are facing a specific decision-making they never thought would happen to them. Sometimes it's a doctor experiencing shell-shock that their well-informed and thoughtful clinical guidance is being rejected by a patient and/or their loved ones. Skillful bioethics practice is remembering its about each of the ‘yous’ and their power in effecting progress whether that be at the bedside, in a laboratory, at policy level, or organizational ethics deliberation.

I also didn’t want to conform to the stereotype that my expertise in the field and practice was solely because of my disability. With time, and conversations with one of my mentors who I have learned so much from, Dr. Rebecca Brendel - who has shown me and others the power of active listening and really identifying the philosophical and value underpinnings at issue  can have in the work we do - I have come to appreciate that what got me in the field was unquestionably my disability and health experiences and, I very much can meaningfully contribute to the betterment of society, my colleagues, and others with disability by proudly owning that association. And much of my career has been a journey in how to navigate that balance – I think I’m getting closer to finding the right balance for me.

Gordon: For our readers who may not know what Bioethics is, please explain it to us.

Emma: Bioethics is an interdisciplinary approach to understanding, mediating, and supporting stakeholders through value conflicts that arise in medicine (research and clinical practice). To practice bioethics is to understand there is not a “good" or “bad” nor a “right” or “wrong” answer or outcome (which often is the case in compliance and law) but rather, the process to the outcome often matters more than the outcome itself. And the more engaged one is in the process, the more likely they are to feel at peace with the outcome - whatever it may be. 

Gordon: When did you attend Harvard Medical School, what degree did you earn, what was the most challenging course that you took and why was it challenging?

Emma: I was a member of the inaugural class of the Harvard Medical School Center for Bioethics Masters in Science - Bioethics and graduated in 2016. Every class was challenging in its own way. I had the time of my life in the program. It was a time in my life that I got to immerse myself in a community of similarly inquisitive and passionate cohorts, learning from successfully passionate faculty who do the work they taught every day in one of the most renowned and busiest medical communities in Greater Boston. My son was about 8-9 years old at the time and as a single parent it was a huge family effort to make this opportunity possible for me but also made the opportunity that much more special. My passion for the field was unrelenting since my decision to practice bioethics in high school following an internship at the academic medical center at UConn. I had struggled to find a successful “in” to the practice that remains to this day extremely competitive and without adequate leadership buy-in and infrastructural support. To  this day many volunteer in their hospital’s ethics space. Not too long ago many were discouraged because the practice in hospitals were overwhelming by doctors who treated it as an ad hoc position. Increasingly nursing and chaplaincy has been supported in their engagement whether it be a small FTE or on a volunteer basis. In some institutions a single or few are employed as full time clinical ethicists often with MD/DO/PA, RN/NP, or chaplaincy (the latter most frequent in religiously affiliated hospitals that also closely affiliate their clinical ethics service to their religious directives, e.g., in Catholic hospitals the Catholic Ethics and Religious Directives are the guiding principles for bioethical analysis and mediation). Social work is increasingly getting a seat at the table. Lawyers and compliance staff, like myself, can be challenged which in some ways is appropriate because bioethics is not compliance or law - one must certainly switch hats!  I am proud of the skills I have to do so and as my time in this career increases, I appreciate that really is an asset - too many are both determined to both stay in their lane and siloes. Earlier in my career, I had sought to be, and only be, a full-time clinical bioethicist, not one who volunteered or performed clinical ethics committee membership or service as volunteerism.

Gordon: When did you work at Biomedical Ethics, School of Medicine University of Connecticut and what were your primary responsibilities?

Emma: My first internship was at UConn when I was in high school. I interned under Barbara Blechner, JD who headed the division of humanities bioethics department at UConn. During my time with her I shadowed, wrote memos and performed literature reviews as part of projects she was working on or cases she was handling, and was exposed to what it meant to practice bioethics in a hospital that was (then) committee driven. Barbara helped me understand the importance of stakeholders, bringing people together, robust discussion, and doing your homework in advance of discussions. She also taught me the importance of writing, reading, and analysis skills as well as standardization in approach. Her patience with me, especially at such a young age, has played a considerable role in my drive to mentor youth and early career professionals.

Gordon: When did you serve as a member of the Biomedical Ethics Team at Boston Children's Hospital? Please provide an overview of research on Jehovah Witnesses’ refusal of blood transfusions.

Emma: My sophomore summer of college I spent at BCH under the supervision of Christine Mitchell, RN, MS, MTS who would become an impactful career-long mentor. During that summer, Christine and I had a lot of chats - sometimes as she drove us amidst Boston traffic with little time to spare from Harvard affiliate hospital campus to the other - where she would entertain my naive questions about what it really looks like to be a practicing clinical bioethicist. I was enamored.  We would also talk about my experiences around the FDA trial and cochlear implants and her own as a bioethicist navigating the tensions around how BCH would and did respond to providing access to cochlear implants technology. She taught me a lot about the importance of authentically appreciating the role that cultures, religion, and identity can play in what may (or may not) be value conflicts in medicine. She also helped me understand the dynamics of decision-making in pediatrics and the impact that adolescent decision-making white papers had on my own experience of making decisions around my cochlear implant as a teenager. She taught me the importance of being authentic at work and the power that one’s personality and interactions can have on creating a sense of security and (re)assurance on all stakeholders navigating bioethical issues. Later in my career she taught me, indirectly, the ways that quiet and time can have on sorting out situations – even those that are injustices. This was a hard lesson for me – I’m still learning it – it is at odds with the disabled advocate I had to be to survive and even get a place at the table. But knowing she has watched my journey to fight to get to the table, get booted from the table, get back to the table and so forth, has actually provided me with reassurance that I, myself, am progressing professionally, and personally. She has also shown me ways to advocate gracefully (and more quietly) and engage others in a way that lets me connect with them on the level that everyone is battling something we all don’t know about.

Gordon: Tell us about your work at Center for Genetics and Health Policy, Center for Bioethics Center Vanderbilt University Medical Center.

Emma: During my senior summer in college, I interned at Vanderbilt as part of my fieldwork for my honors thesis on prenatal testing and disability rights. I had tremendous support from Connecticut College for my self-designed interdisciplinary major in Bioethics which I modeled after Brown U (the only undergraduate program to have a major in Bioethics at the time). There are so many faculty at Conn - from so many disciplines - who played a tremendous role in my academic and personal success in this major - my not naming them is only for brevity here. Drs. Derek Turner (Philosophy) and MaryAnne Borrelli (Government)  supervised my honors thesis. MaryAnne proposed the creative idea of setting up the thesis after Lon Fuller’s work  ‘The Case of the Speluncean Explorers’ with different judicial opinions weighing in on the case. This was not only a great approach but supported my intentions to matriculate to law school to develop the skills in analysis, writing, and balancing in my work in bioethics. Dr. Turner was this enthusiastic professor - would literally jump up in excitement - who would entertain and work through all these different hypothetical and real ethical quandaries and push me to apply logic and analysis not emotion or preconceived bias. It was from him that I learned very early on that I had to authentically engage in discourse, even allowing myself to experience the discomfort, to truly analyze a morally permissible pathway. Later Christine Mitchell would teach a course I was in and discuss implicit and explicit bias – and I found myself confident that I really understood what she meant about checking ourselves as bioethicists for bias. It felt weird though because some of my cohorts did not share that confidence or resolute understanding. I later understood it was because of my interdisciplinary teachers who pushed me to be authentic and even intellectual in my work that I never knew otherwise — and, at times in my career I have found that challenging because I’ve learned how many others do not have that fundamental grounding experience. I cannot imagine not having that engrained so deeply that it is only natural to harness oneself at all stages of doing this work. And, in turn I think — I hope – this has made me a better teacher to those I have mentored, taught, and collaborated with.

Returning to Vanderbilt…. Dr. Ellen Wright Clayton supervised this internship which was focused on different stakeholders perspectives to prenatal testing and disability rights issues. I also appreciated I was literally on the Bible Belt looking at this issue which gave me a different perspective than I had studying it theoretically from the Northeast coast. I was given access to various disability clinics such as the Down’s Syndrome Clinic which helped me not treat disability advocacy as advocacy in a vacuum. Ellen is a JD and MD. She helped me learn about compartmentalizing when doing work in clinical bioethics. For example in the morning we would be rounding on patients as part of her role in the child neglect and abuse program at the hospital where she would practice medicine but with the insight of being trained in law. In the afternoon, we would round on bioethics cases. It was important to keep these two types of inquiry and work separate. While neglect and abuse are fraught with moral and ethical questions and challenges, they really are not bioethics cases. There is not a value tension about decision-making and actions to be taken in clinical care – bioethics. There are unethical and immoral behaviors – as defined by our legal, religious, sociocultural paradigms – occurring to the patient outside of medicine. Both certainly have moral distress and even some questions about ethical remedial actions but, the underlying issue is not an ethical value conflict about medicine. Ellen gave me hope that I could find my niche in bioethics in a meaningful way and one that gave me access to clinical ethics work not just research and organizational ethics practice. But she showed me it would not be easy nor would it be a linear simple pathway. I might not have understood and appreciated those lessons as much as I did after my own trials and tribulations later in securing buy-in and roles as a full-time clinical bioethics in hospitals. But she did contribute to the work I did in developing and rolling out a Medical Legal Partnership while also practicing Clinical and Organizational Ethics at Centura Health. Finally she taught me the value and joy in combining academia with the practice of bioethics. While that is a constant work in progress for myself in practice, the love and passion was certainly sparked by her opening my mind to the fact I would even enjoy it.

Gordon: Tell us about you work as Rule 9 Attorney - Children Advocacy Youth Advocacy Clinic (CAYAC) University of Washington School of Law.

Emma: My attending law school was never about practicing law in the traditional sense. I wanted a terminal degree. I knew that was important in my career but also for someone with a disability to have a chance to even try to achieve the aspirations I had and have for myself. A terminal degree is also a minimum requirement for anyone - disabled or not - of my aspiration pursuits. When I was in law school I was most concerned with learning how to think, read, write, articulate/communicate, and speak effectively and optimally. I also wanted to understand the underpinnings of public policy and law development and enforcement to better understand that intersection with medicine and thus role in value conflicts in healthcare and research. Certain subjects were really hard for me especially in the large lecture hall environment of law school. Such as contracts. I was young – having attended law school straight from college so I didn’t have a lot of experience to lean on to understand more abstract, technical, and conceptual operations of law. For example, I had signed less than a handful of contacts at that point in my life. I was pulled to the classes that had to do with human behavior. And for a while I was really enthusiastic about – even to the extent of questioning if maybe I did want a traditional law career – youth advocacy and juvenile law. I even fiddled with the idea of becoming a judge of the then-developing juvenile courts. In CAYAC we worked as Rule 9 attorneys (supervised practice of students) on cases. It was not long before I realized even though I loved the adrenaline rush of case prep and arguments as well as the human element of active listening and support of clients, I would go down rabbit holes about ways I could employ an interdisciplinary approach to help advise and support the clients to optimize clinical outcomes. Whether it be developing guidance materials about disability accommodations in various settings (school, housing, etc.) which inform reducing recidivism rates. My time in CAYAC and NohLA would contribute to my work and love for Medical Legal Partnerships in healthcare as well as reaffirmed my desire to be in a hospital or academic medical school center setting to drive bioethics practice with the stakeholders first hand – practitioners, investigators, patients/loved ones, leadership, etc.

Gordon: Tell us about your work as Associate Northwest Health Law Advocates.

Emma: When I was in law school, I had the opportunity to do in essence a capstone – legal internship - at NOHLA under the direction of Janet Varon, JD, Founder and Emeritus Executive Director. During my time at NOHLA, Janet gave me tremendous exposure to how to do health law advocacy for affordable and equitable healthcare in Washington state. Some of my focuses was Medicaid SCHIP and Part D rollout for dual-eligibles with participation on a Kaiser Commission For Medicaid and Uninsured grant.  I also worked on issues around EMTALA and community health benefits programs. Some other work I did was understanding how to translate federal actions at the state level as well as how to then roll-down those policies into practice in the communities. During my time I enjoyed seeing how advocacy translates to work on policy and memorandums in the morning followed by listening sessions in the community in the afternoon. Janet taught me what stakeholders really mean and the importance of you, yourself, going to them where they are and live to really hear their voices.

Gordon: When did you serve as a Committee Member Middlesex Hospital Medical Ethics Committee and what did you find most rewarding about your work were there?

Emma: After relocating back to CT, I had the opportunity to be a community member at large on Middlesex Hospital’s bioethics committee, in Middlesex CT. During my time on the committee, I learned more about the often overlooked importance of community members on these committees but also the lack of visibility these members have and their challenges. That is broadening my perspective from the hospital’s perspective as to the challenges to onboard and involve them. This experience further defined my understanding of stakeholders as well as the need to get away from physician-hobby driven bioethics in hospitals. I also appreciated that committees needed to constantly stay current in education and was impressed by how robust that was for such a small hospital. They did an excellent job allocating resources to drive robust committee discussions on contemporary issues.

Gordon: Who is the ethicist that you admire most and explain why.

Emma: It’s not a who - there are so many. I admire bioethicists who are courageous and most of all authentic. I admire bioethicists who are not afraid to talk about the hard things, to challenge ‘the way things are’ or (undesirable aspects of) hospital cultures. I most admire bioethicists who tackle hard ethical issues in their research and deliberations and employ creative solutions driven by kindness and inclusivity.

I spoke earlier about one of the hardest things I have navigated in my career has been the armchair ethicists, those who are drawn to the power of being an “ethicist.” They are quick to form an opinion and often have a “the right answer” mindset. Too often they stick to what they know and make decisions from there — only from there. For example, I remember presenting a case of a woman in her 40s suffering from a GI condition rendering her dependent on invasive enteral nutrition who asked her specialist to discuss with her and other members of her care team transitioning to oral feeding although it would likely not work, and she could die.

Before I could finish explaining the case and stakeholders, this MD interrupted me to say simply “You should know… we don’t withhold nutrition from women in their 40s simply because they don’t want enteral nutrition. She’s too young to do that.” I responded with the power of quiet but that moment has stayed with me throughout my career.  He prided himself on being a leader in clinical ethics at that hospital. I admire the ethicists who engage in fruitful discourse with their peers and who understand ethics is not “doing things the right way.” I recently collaborated with others on the publication of Complex Ethics Consultations: Cases that Haunt Us Volume 2. Under the leadership of Drs. Denise Dudzinski, Paul Ford, and Kaarkuzhali (Babu) Krishnamurthy this powerful work is done to encourage the vulnerable discussions among bioethicists about the work they do and the space we do it in. I admire their initiative and creativity to create space for bioethicists to express their own humanity and ground us all to the fact we are all just only human. It is those bioethicists who appreciate that and combine that with an understanding of rooting their work in actual theories and logic.

This rooting in actual theories and logic also must be, as I learned from Dr. Rebecca Brendel and Dr. Patrick T Smith as well as all the “greats” in Bioethics, performed and articulated in deliberately clear and accessible manner to all stakeholders and employ a real connection with all stakeholders. Bioethics is getting to the heart of the tensions — you cannot do that authentically or fairly to each stakeholder from an armchair.

I also am drawn to bioethicists who appreciate a big part of their work is to teach, I mean that colloquially, and elevate the future – people and communities.

Please tell us about your work Corporate Bioethicist Medical Legal Partnership Program at Centura Health

Emma: I was recruited upon graduation from the HMS Bioethics program to help develop Centura Health’s MLP at the system-level. This program was unique because it was housed primarily in-house and then developed MOUs and collaborations with the legal services in the community. It was aspirationally unique and very successful in its first two years before I left and it was dismantled. I also served as the “Corporate Bioethicist” which in essence was overseeing all the Bioethics services across Centura’s then 17 hospitals across CO and KS. This was a unique experience and I really missed doing on the ground clinical ethics consultation. I got to go on site and help many hospitals on cases and relished that. I also learned alot from seeing the tremendously broad disparity in how committees functioned both from operational and knowledge lenses.

Gordon: What is one of your fondest memories when you served as Clinical Ethics, Manager at the Mayo Clinic

Emma: When I joined Mayo Clinic's (MN) clinical ethics program it was undergoing major restructuring and was surviving based on a powerful and dedicated volunteer consult service. They were determined to ensure ethics consults were available and performed to the highest integrity. They themselves were also experiencing moral distress – something they spend tremendous time counseling and supporting teams through. My fondest memories have to do with the conversations I had with each of them learning about what the service meant to them, the historical knowledge, and the visions they had. At Mayo (MN) the research and educational shields of the bioethics programs were incredibly robust. The clinical ethics program was driven by skilled bioethicists without the infrastructure support needed. That combined with the need to develop and deliver standardization across a large geographic health system of community hospitals, academic centers, and large hospitals, nationally and internationally - was a priority. Then the pandemic hit. My fondest memory is the bioethicists doing the courageous and authentic work in the trenches despite the deserved appreciation.

Gordon: Why did you found Bioethics Alliance in Boston and what is their mission?

Emma: Bioethics Alliance was developed and co-founded with some friends at the HMS Center for Bioethics. Since those earlier years it has settled to be a nonprofit that provides resources whether it be to patients/loved ones or industry to navigate bioethical issues. We advise industry on bioethics guidelines and committee development. We connect patients and loved ones to ethics services where they are. We have been involved in research projects and collaborations. Most of the work we do is focused on mentoring and advancing opportunities for students from high school through graduate school. That is the most rewarding. 

Gordon: You also serve an Affiliate Harvard Medical School for Bioethics and what do you find most rewarding as an Affiliate?

Emma: I love being an alumni of HMS Center for Bioethics. Being an Affiliate is an honor that lets me engage more in the Center’s mission, teaching and mentoring students, as well as to meaningfully contribute to supporting the program. I find myself in lecture halls, book readings, and at receptions frequently learning more and having the time of my life in robust discussions. HMS - has always been but is now (in 2025) especially so - a place to have authentic inquiry with so many perspectives and intellect. It truly is my place with my people. It is also an opportunity for me to give back and contribute to Capstone experiences for current students. My Capstone with David Sontag, JD, MBE at Beth Israel Deaconess Medical Center was formative in connecting all my experiences and learnings up to that time. It took me out of my comfort zone at times, exposed me to the trenches, and built many relationships that are meaningful to me today. David also showed, not just encouraged, me to leverage my law degree in a meaningful way to those I serve.

Gordon: Tell us about your work at Conflicts of Interest and Industry Relations, Beth Israel Lahey Health·

Emma: For family reasons in the height of the pandemic, I decided to relocate closer to family in Northeast and transition to research bioethics. This was a huge decision for me, and at first felt like a big sacrifice. I had spent my entire career to that point adamant I do nothing but clinical bioethics. During my career I had done some research bioethics including conflicts of ethics and organizational ethics. I have worked at BILH in Conflicts of Interest and Industry Relations about 4 years now. I love doing this work and it has been equally rewarding and meaningful to me. I do not miss the adrenaline of clinical practice as much as I had thought to. Research certainly can keep you on your toes - now more than ever! In my role I address research, clinical, institutional, and organizational conflicts of interest and work closely with our academic and research teams including Technology Ventures, IRB/Clinical Trials, Supply Chain, Contracting, Vendor, Office of General Counsel, and Philanthropy teams as well as so many more.

Helping the institution, the investigators, industry, sponsors, and agencies work together to protect the objectivity of design, conduct, and reporting of research is important work. And I enjoy doing it even though it also is courageous work. I also enjoy working with these teams to help support relationships with industry. Having organizational ethics conversations can be isolating and discouraging work but I have found many who are invested in doing that hard work too. There are many across BILH who have taken very innovative, inclusive, and thoughtful approaches to have these conversations and that makes me even more humbled to be part of that great work.

Gordon: What are the bioethical concerns in Genetic Research?

Emma: There are so many concerns ranging from informed consent, justice issues, privacy, ownership, rights of embryos to children to adults, and much more. They are not novel issues, they are challenging issues because genetic research is rather abstract and a constantly expanding adn changing making providing a bioethical ‘rules of the road’ a constant moving goalpost.

I spoke earlier about how I have come to embrace identifying with and contributing to the disability bioethics space. In particular I have been looking at the ethical issues around gene therapy for hearing loss. Frankly there are, again, no novel ethical issues. What is novel is understanding how ethical tensions develop and exist in the space of treatment for hearing loss specifically because of the existence of alliances and communities within the hearing impaired realm. Specifically there is the Deaf community which generally speaking uses sign as its primary mode of communication and sees Deafness as a community and a culture. They often generally reject treatments that transition someone from Deaf to having increased hearing capabilities.

In fact some used to throw tomatoes outside of cochlear implant centers. Then there is a broader community of deaf, hard of hearing, hearing impaired who interface in varying degrees with the mainstream, some know sign language, some do cued speech (a combination fo sign and speech), some are strictly oral. Then there are those who see themselves as more mildly hearing impaired really not having a place outside of the hearing mainstream or membership in the hearing impaired communities - often late onset hearing loss of mild degree. Which “community” or culture you belong to guides the decisions the patient makes about hearing loss technologies and genetics.

ENT and Otolaryngology is the only specialty that interfaces with this type of community driven clinical values and decision-making. The only other type of speciality I have identified is for dwarfism and little people. Not to be crass but you don’t hear someone with a mobility disability say I belong to the mobile or the immobile community. You do hear I belong to the Deaf or, the deaf community. And how they identify informs their values. ENT and Otolaryngology around gene therapy need to have training and processes to inform their interaction with their patients that no other speciality needs to have in order to navigate the ethical tensions in that very specific population that is incredibly unique.

Gordon: Thanks for an incisive and exceptional interview.