Hull, Sara Chandros (2025)

BA: Good morning. Today is June 12, 2025. My name is Brittany Acors. I am a postdoctoral fellow in the Department of Bioethics in the Clinical Center. Today I have the pleasure of speaking with Sara Chandros Hull. Dr. Hull has worked at NIH since 1999 and has recently retired. While at NIH, she served as Deputy Scientific Director of the National Human Genome Research Institute [NHGRI] and held joint appointments with the NHGRI Bioethics Core and the Clinical Center Department of Bioethics. Dr. Hull’s service and research have focused on the intersections between research ethics and genomic research, on capacity building, and on the ethical conduct of tribal research. Thank you for taking the time to talk with me today, Dr. Hull.

SH: Absolutely, looking forward to it.

BA: I’d like to start off by talking about your education. You earned your BA in biology from Brandeis University, and your Ph.D. in health policy and management from Johns Hopkins. Can you tell me how you chose those fields, and what motivated your shift from biology to public health?

SH: Sure. I always loved science, and I credit a combination of the New Jersey public school system and the Cranford Public Library with access to really cool books on anatomy and botany and all sorts of things that I got to explore within walking distance from my home. More specifically, when I got to high school, my senior year was in 1988–89, which coincided with all of the announcements about the emerging Human Genome Project, and in my AP Biology class, we went intensively into genetics. I got to do a really interesting genetic research project and had wonderful debates with my classmates about the moral dimensions of genetics.

I decided then that what I wanted to do was study genetics, and so that’s what I pursued in college. My BA in biology from Brandeis University was intensively focused on molecular cell biology, including working in a lab for a few years, studying the genetics of a one-cell organism called Naegleria gruberi. Working in the lab for those three years actually helped me come to the realization that what I loved so much about genetics wasn’t the conduct of the science itself, but it was those debates that we were having back in high school about the applications of the technology and of the knowledge that we were gaining.

A couple of things I was very fortunate to be exposed to while I was in college allowed me to pivot and take a different path into bioethics and public health. One was the start of the master’s degree program in genetic counseling at Brandeis University, which opened my eyes to alternative career paths from bench science and also gave me an opportunity to take some of the elective courses that were designed for that program, including one in bioethics. I got to take a bioethics class in college that was framed for genetic counseling students. I even briefly considered going into genetic counseling, but I realized I did like the idea of a more research-oriented, rather than clinical, career, doing research on those really tough social, ethical, and legal questions.

I also took a health law class, and I seriously considered applying to law school, and that was going to be my plan. And I’ll say, just serendipity, right place at the right time kind of thing, I got this postcard for a graduate program in law, ethics, and health, which was a thing that, up to then, I didn’t know existed. It was from Johns Hopkins. It probably just had a phone number to call, and somehow, among that big stack of catalogs you get from graduate schools when you’re a senior in college, it didn’t get lost in that pile. And I called, and I followed through, and I applied to exactly one graduate school, and I happened to get in. If I hadn’t, I would have taken a couple of years off and pursued the law school path. I didn’t choose public health per se, but it was in that context that I found the right way to tie together all of my emerging interests and to embark on a career path that I couldn’t quite yet fully envision but knew that I wanted to pursue. So that’s how I got to my programs.

BA: That’s amazing—so many little points of continuity that, now that you look back, led you into this direction that you didn’t even know at the time was an opportunity available.

SH: Yeah, it sounds very linear and deliberate and intentional when I look back on it. But it really wasn’t at all. It was being ignorant—or open enough to anything and everything—to be willing to take advantage of what was in front of me with a hope that it would lead to something interesting.

BA: While you were at Johns Hopkins, what was that law, ethics, and public health program like, and how did that lead you into the next directions you were going to take?

SH: Great question. There’s a substantive answer to the question and a more emotional and experiential answer. As a first-generation graduate student, and even first-generation college graduate on one side of my family, I was completely unprepared for graduate school. Even for someone who figured out how to do okay in college, I was really green, let me put it that way. So, I took out 100% loans and had very little in the form of scholarships at the time. That might not have been the best economic investment, but I’ll come back to that later in the conversation.

I really didn’t know what public health actually was. In my first year, my program was anchored in the standard coursework for the field of public health, with a lot of opportunities for electives and more interdisciplinary work later on. [My program] was primarily at the Johns Hopkins School of Public Health, but I also got to take classes at the Arts and Sciences campus and also in the philosophy program at Georgetown in their bioethics program. Setting aside the logistical challenges of a quarter and a semester-based system at two different universities (scheduling was always challenging) I had to kind of fake it until I made it. I didn’t take a gap year. I was just so excited about this opportunity that I jumped in, and I’ve never looked back. But it took me a little while to find my footing.

That said, being there was amazing, and it gave me access to some of the most amazing, thoughtful, helpful people. The mentorship that I had from Nancy Kass, the opportunity to be on all of these campuses, and to do that networking really opened my eyes to what was possible at a time where bioethics wasn’t a very well-known career path. I’m incredibly grateful for the patience of those who stuck with me and gave me that mentorship and helped me to mature once I got there, since I hadn’t had those prior experiences or models to draw upon.

BA: Under that mentorship and in this new endeavor of public health and bioethics, what was your dissertation about?

SH: My dissertation was a qualitative case study of two adult populations, people who had survived now to adulthood with what used to be considered classic childhood genetic conditions. My two case studies were sickle cell disease and cystic fibrosis. I was very interested in reproductive ethics at the time, and that had been a heavier focus of my undergraduate studies. I was looking at reproductive ethics in the context of disability and what the increased opportunities for prenatal decision-making meant for those who were born with genetic conditions and disabilities. I became very interested in how the healthcare system was regarding these communities as adults: if they were embracing their reproductive potential, how they were caring for them in traditionally pediatric settings. I did an intensive embedded case study within a single health care institution, comparing very differently structured sources of care for both populations. I did interviews both with adult patients with these conditions and then with the providers, as an umbrella, who see these sorts of patients in that setting. And I was able to work out a better understanding of adulthood and reproductive decision-making in this context.

BA: That’s so fascinating. While you were in grad school, you were also involved with the President’s Advisory Committee on Human Radiation Experiments from 1994 to 1995. I was curious how you got involved with that as a graduate student and what that experience was like.

SH: Yeah, speaking of serendipity. I put in my first full year of coursework at Hopkins as a graduate student, all four of my semesters of biostatistics, and epidemiology, and health services research, and the basics on health policy. In parallel, towards the end of my first year, what was going on in the world was a revelation and a Pulitzer Prize-winning series in the Los Angeles Times by Eileen Welsome on Cold-War-era plutonium experiments performed on U.S. citizens in the name of national security and in fighting the Cold War. To her credit, the Department of Energy Secretary [Hazel O’Leary], when she was confronted with these revelations, said we really need to look into that as a country. That led to President Clinton empaneling an Advisory Committee that was granted a great deal of discretion to declassify thousands of documents and dig into this history, and to write a truthful report exposing what had happened and, in parallel, look at the contemporary research context to make sure we’re doing better.

The serendipitous part is they appointed Dr. Ruth Faden to chair this Advisory Committee, who just so happened to be the director of my graduate program. So that’s how I became aware of it. I will say I legit applied for, was interviewed, and was selected as one of the junior research associate staff members who would support the work of this advisory committee. That led me to make what, at the time, for some reason, was a difficult decision to take a year-long leave of absence from graduate school.

And I can say the reason why that was difficult is that my father, who never finished college, always encouraged me to just get through school, go all the way through school, get your degree and your credentials, and then you can figure out what you want to do with it. But I sat down with him, "like, Dad, I’d actually be working for the President of the United States." And we came to realize this was the opportunity of a lifetime, and I couldn’t turn that down.

So that’s how I got there, and that was an amazing experience. It really is what I credit with helping me understand a lot of things: how policy, and research policy in particular, can work within the federal government context; a really in-depth understanding of the executive branch and all of the different cabinet-level agencies that work within that branch; but I think, even more importantly, a sense of accountability on the part of the government. Here was a President of the United States apologizing. At the end of the Advisory Committee’s work, when [Clinton] was presented with the final report, I actually witnessed a presidential apology to the victims of these experiments, and even a form of reparations for those who were harmed. And that’s not very well known, unfortunately. A funny story was that, on the day that the report was released and was supposed to be first-page news, it was the day of the infamous O. J. Simpson verdict. And so we got bumped to a later page, and it got absorbed, which in no way diminishes the importance of that day or the incredible memory of sitting a few rows back from a stage where the President of the United States, and the Secretaries of the Departments of Energy and Justice were up there on the stage, along with my mentor, Ruth Faden. Those of us in the room saw what it looks like for the government to be held accountable to the citizens that it serves, and so that became my model of government and of public service. That’s what I assumed it was supposed to be like, and that is something I have carried with me throughout my career.

BA: What an incredible experience. Wow. I’m also wondering if your experience on that Advisory Committee helped frame some of your research questions about disability and reproduction in particular.

SH: It formed a very important foundation for my research questions but actually led to more of a pivot. What I didn’t mention yet is that my specific role on the staff of the Advisory Committee was the part where we looked at the contemporary context. We were taking a look at active research protocols that involved ionizing radiation and all of the IRB [Institutional Review Board] documentation. We were reviewing policies; we were interviewing current research participants in research funded by a number of different federal agencies to look at the adequacy of informed consent understandings of what people were agreeing to, understandings of whether or not there would be benefit, and really connecting the historical findings with the contemporary context and looking forward. That’s really what motivated me to change my focus and look more at research ethics, with an eye towards trust as a foundation of the research relationship, of the role of the federal government, and noticing in particular that so many of the people who were harmed and wronged in these many, many studies that we uncovered were members of minoritized, under-resourced, disenfranchised populations. We were looking more deeply at the roots of that and the remedies for that. So yes, it had a very powerful lifelong influence on the kinds of research questions I pursued.

I ended up setting aside reproductive ethics except for a couple of cool projects that I got to collaborate on here and there. That’s what led me into the research ethics angle, even though my dissertation didn’t change at the time. A lot of what I learned about qualitative methodologies also really helped me in executing my dissertation and a lot of future research. I will say, at Johns Hopkins, the default was to do quantitative empirical research for one’s dissertation, but I was able to pull off doing a qualitative one.

BA: I can see the threads of everything you worked on in the Advisory Committee and your dissertation into your future work, which we’ll get to shortly. But I also realized that your time at Johns Hopkins coincided with the founding of the Berman Institute in 1995, so I’m wondering if you have memories of the early days of that or what your involvement was.

SH: I do. In some ways, that just formalized and increased the visibility of the program that I was in, which was very small and only had a handful—I can think very quickly of five of us—in those very early years. But it also, in a very lovely way, gave us more exposure to postdoctoral Greenwall Fellows, who were becoming incorporated into the program, and faculty in other schools and divisions of the university. So, on my various committees before and in defending my dissertation, I was able to draw upon the expertise of faculty members from the School of Nursing, from other medical campuses, and folks who had expertise in anthropology and ethnography. It just ended up expanding my access to bioethical issues, but also the people working on them and opportunities for networking. That’s how I remember it. I’m sure there were a lot of things happening externally related to that visibility that had to do with fundraising and grant applications, but I was not so tuned-in with all of that at the time.

BA: Sure, but it sounds like it set you up well for the kind of interdisciplinary work that you’d be doing here at NIH, which brings me to ask, how did you come to join NIH, and what was your first role here?

SH: I credit my coming to the NIH to Ben Wilfond. He is a wonderful colleague and mentor who I still stay in touch with. At the time, he was making a transition from being on the faculty at University of Arizona, and he was coming to the NIH to work as a bioethicist within the intramural research program of the NHGRI. I invited him to be a member of my dissertation committee because of his expertise on cystic fibrosis. He is a pediatrician and board-certified pulmonologist who had done a lot of the early scholarship on the ethics of genetic testing and prenatal diagnosis and things like that for cystic fibrosis. He very graciously agreed, and that was the start of a wonderful collegial relationship.

As I was winding down my dissertation and getting ready to defend and starting to apply for positions, he brought to my attention a position at NHGRI for an IRB administrator for their new intramural IRB that was just being stood up. The “Genome Institute” actually started as a center, then it developed its intramural research program, and then it became an institute. Then that intramural program grew, and they decided, rather than relying on another institute’s IRB, it was time to develop a specialized IRB that had the expertise to review its own protocols. That was the 14th [intramural NIH] IRB at the time.

[Wilfond] asked me if I would be interested in applying to that position, and I said, “No, I really don’t want to be an IRB administrator. That’s not the work I envisioned.” He said, “Wait, wait, wait, hear me out. I have been able to negotiate, along with my own position, a joint arrangement.” And he explained to me how he had a joint appointment between the Genome Institute and the Clinical Center’s Department of Bioethics, where he would be a faculty member. In parallel, he had negotiated for this administrator position to follow in a similar model, and that became a lot more appealing. I applied, then I came and interviewed. I had been applying for a few other positions. It turned out I had three possibilities: one which was “can you wait until we finalize creating this new PhD program at another university and then you would be great to come in and help us run that”; one was a postdoctoral fellowship; and then there was this position [at NIH]. So, it really wasn’t a hard choice to say yes.

From the beginning, my role was conceptualized as being a combination of administrative support/service and research. I was always able to keep [those dual roles] in parallel, coupled together throughout [my career]. But when I started, the Department of Bioethics didn’t quite know what to do with me. I actually had less experience in the field than some of our own postdocs, but I was coming in in a permanent position. They called me—kind of euphemistically, but perfectly fine—a “special expert,” because they just had to come up with something and apparently that’s a category. But it gave me a seat in the department and an opportunity to just be part of the group to the extent that the department doesn’t necessarily always have very clear demarcations; everybody has a seat at the table. I got to have that seat at the table and kind of work my way up to faculty over time.

BA: Yeah, that’s great, and the department was in its very early days then, too. So, as they were figuring out a title for you, I’m sure they were also figuring out, what does this program look like for us?

SH: Yeah, exactly.

BA: With your joint appointment, a lot of your work has focused on the ethics of genetics and genomics, particularly related to informed consent, which goes back to some of that earlier work during grad school. What have been a few of the key issues you’ve worked on in that realm?

SH: This picks up on the theme of always having an administrative and more service-oriented component to my role. In the beginning, my role was focused on standing up a new IRB that focused specifically on the ethics of rare genetic disease research and of the collection of biospecimens that would be stored and used in ongoing ways in the context of natural history studies. There were some very practical questions that came up around that, like how should we have our investigators develop and frame their consent forms for that kind of current and future anticipated future use [of human biospecimens]? How should we structure consent forms to explain to subjects that we don’t know what we want to do in future, but, you know, please trust that we’re going to store these samples in secure ways and the research will be in service of furthering our knowledge about this rare disease that you have? How do you do that?

Those questions led to the empirical studies that I started conducting under Ben Wilfond’s mentorship. My first very big project was an empirical study of attitudes of current patients at academic medical centers across the country about their informational needs and hypothetical decisions that they would make regarding the collection, donation, storage, and future use of their blood, as a typical type of specimen that’s collected.

I also just want to footnote that this was the study I described as part of my application to the NIH loan repayment program. Going back to an earlier theme of how green and in debt I was by the time I left graduate school, that [loan repayment] program saved me from my youthful choices in that it paid off 80% of my loans as part of my commitment to public service at the NIH and carrying out this research project in particular. I say that because it’s a program that, to my knowledge, still exists; is a very important recruitment tool for folks at NIH to be aware of; and is, I think, a very important incentive for people who might be dissuaded from a path of research at the NIH to look into and to ask for. It is what made it possible for me to have the career that I had in many ways, and to not be still swimming in debt. I wanted to get that out there as part of this conversation, but back to the research.

That empirical study ended up being important. It led to some very practical decisions—we used the findings to inform policy and guidance that we developed for our intramural IRB. It also contributed to the literature in ways that led to broader policies related to data sharing, but more so for something we refer to as “broad consent.” Broad consent is the idea that, for the majority of the public that we interviewed and that many other people have interviewed, there’s a comfort level with getting one-time more open-ended informed consent for broad storage and future use of biospecimens for genetic and other kinds of research. That conversation around broad consent, including my research, among many other empirical studies, led to changes in federal policy to default to broad consent as an approach. It also led, in an indirect way, to my post-hoc realization that there are real problems with making policy based on majority views. That relates to those that we leave behind, those who would not agree, who have good reasons not to trust us with the long-term storage and future use, using our own discretion on what those future uses are, based on things like fraught and exploitative historical contexts and racism. These things have led to enduring mistrust and help to explain the problematic underrepresentation of many communities from our research repositories, keeping it to the genetic context.

That work also eventually led me to pivot to focusing exclusively on those who were in the minority view on those kinds of surveys and empirical evidence base that I contributed to. They deserved our attention and deserved policies that would make research more favorable and accessible to them and would encourage us to be more trustworthy in our endeavors partnering with those folks.

BA: I wonder about how that trust has changed over time, if you see a growth and increasing willingness to store data for future use, now that genetic tests are a lot more common than they were 25 years ago, or if maybe it’s turning the other direction, and people are more protective of their data.

SH: That is a hard question to answer from my n-of-1 perspective. I have seen a lot of changes, and I don’t think I’m qualified to give an empirically informed answer to that question. There were major events like 9/11, which happened very early on in my time at the NIH and led to increased overall trust in the federal government, if only briefly; and pandemics, which led to much less trust in the government and its use of research data. I also think there are generational differences in trust in digital databases in general. You see different generations willing to put everything out there on social media, and other generations being very reluctant to do so. Ironically, those are the generations who might trust the government more. So, I’ve seen a lot of changes and trends, and I don’t think they all go in one direction or another.

Another trend that I’ve seen, and one that I feel a little more confident speaking on, as somebody who was at the NIH for 26 years, I think internally, as an agency, we have gotten better, which doesn’t mean good or perfect necessarily, but we’ve gotten better at acknowledging that the onus is on us to be trustworthy, to communicate with the public, to engage with specific communities about what our plans are, and to be much more transparent about the risks and the efforts that we’re making, to ensure that this isn’t just us collecting a whole lot of public data for the benefit of very few. There is a greater vocabulary within the NIH talking about trustworthiness and slowing things down and consulting and doing the things we need to do.

That’s not necessarily the question you asked. You were talking more about the general public, but what I hope that translates into is a trend towards the public trusting more in what we’re doing. But I also am aware that the bridge with the private sector and commercially available, direct-to-consumer genetic testing has also gone through some significant changes where trust may be decreasing in those systems. So, we have to also reckon with how we’re partnering with the private sector, and how that all plays into this as well. It’s something I’ve given a lot of thought to, but I don’t exactly know where we’re going with all of that. But for my part, I think I was most concerned with the inward-facing capacity-building that we needed to do as an agency, and that was very firmly within my lane.

BA: Yeah, I think that’s great insight and shows kind of how complex and difficult to navigate that these questions of trust can be, and how valuable the work of research ethics is in that context. I want to move a little bit into thinking about one of your more formal roles: you came to NIH to help stand up the NHGRI IRB, and then from 2014–2018, you served as chair. Can you tell me about what that work entailed?

SH: Yes, I really enjoyed that period of time where I pretty much played every role one can play in relationship to that particular IRB. I was around at the very beginning: I helped as an administrator, as a minute taker, organization of the files, development of templates. At some point I became a member, and then a vice chair so that I could help to fill in, and then I was asked to take over as the chair. I’ll note that I was one of the first and one of very few social scientists, bioethicists, and non-clinicians to serve in that role at the NIH. It’s an interesting role to have.

I really enjoyed disagreement in our IRB meetings, and it became part of my goal to foster respectful disagreement. I’m sure this has something to do with things that Ben Wilfond taught me: the idea that a deliberative process is more robust when everybody can feel free to speak up, when dissent is respected and even recorded. And that lack of unanimity isn’t a failing. Consensus and coalescing around a robust decision is the goal, and so it was a fun challenge to encourage the non-scientific and the unaffiliated members of the board to have an equal voice, and to sometimes reign in some of the stronger voices that were maybe very persuasive because of their technical knowledge, with the goal of ensuring respectful discourse, ensuring equal airtime. I’d later be critiqued when the IRBs reorganized for allowing discussions to go on too long, but I could live with that critique. That was part of what I was going for. It did become a skill to become a little more efficient at doing that, and once people caught on, it became more of a habit for everyone.

I really loved the committee dynamic and the goal of a robust process, which I felt was more transparent and more in line with what the goal of having an interdisciplinary committee was supposed to achieve. I really enjoyed being able to have one-on-one working relationships with the investigators, who felt comfortable coming to us with questions at any stage in the research process and the protocol development. I loved having meetings where we could have food at the meetings, and we were in-person. We were developing a community and a culture of ethics, and we were small enough at the time where that was possible. All the members—maybe 14 at the most at any one time—could get together annually and have a retreat to go in-depth into topics that had stumped us. And we could invite visionaries to come in and talk about the next exciting research that we needed to be prepared to review. That was a time that I really enjoyed the intimacy of the IRB process.

BA: I think it’s a unique skill to be able to foster that kind of collegiality where you’re not afraid to challenge each other but know it’s out of respect and wanting to do the best science. You also had the opportunity to serve a detail as a senior advisor to the Tribal Health Research Office. Can you tell me about that experience?

SH: I can. Let me give you a little more background about what had happened in between. This relates to what I said earlier about focusing in on the populations that were not comfortable with things like broad, open-ended consent and with whom the federal government had failed to demonstrate that they were trustworthy in research relationships. Over time, I ended up focusing in on developing long-term relationships with a number of Indigenous colleagues, communities, and structures that focus on research ethics. The IRB internship program that the Department of Bioethics used to run initially focused on bringing in IRB administrators from low- and middle-income countries. When I was able to get more involved with the program, it also shifted to focus on similar types of communities within the United States. I had been focusing on Tribal colleges and communities and HBCUs, historically black colleges and universities, in particular. I really started to focus in more on the Tribal work. Through a number of wonderful connections with the National Congress of American Indians and with the Indian Health Service, I started to build out some expertise and some treasured relationships with individuals who are citizens of Tribal nations within the United States. We were doing this work where we could collaborate to help support the capacity of Tribes to review research in their own communities, including, but not limited to, federally funded research.

That really started to blossom in 2014–2016. In 2015, the Tribal Health Research Office [THRO] was created at NIH in response to President Obama’s Executive Order, in which he articulated an expectation that federal agencies under the executive branch would do better at being in a government-to-government relationship with—well, we’re now at 574—federally recognized tribes and engaging in processes of consultation to get formal input on the development of our programs and policies that relate to Tribal citizens and to Tribes as sovereign nations. That respect for Tribal sovereignty was the space in which I had been working without this formal structure being in place, but as soon as it was created, I was able to start working very closely with Dr. David Wilson, a member of the Navajo Nation, who was the first person to be appointed as Director of THRO. I had been working with him in the Office collaboratively on a number of initiatives.

Then, during the [COVID] pandemic when we were all sent home to work, we were watching how things were unfolding in the rest of the world and watching the disproportionate impacts, especially in Tribal communities. I can’t reconstruct the exact moment, but I just had a strong drive to see if I could apply what I had been learning in a more focused way to help support the work of THRO. This was like dusting off my public health ethics knowledge. Making decisions in a time of crisis and crisis-planning is different than the day-to-day research ethics principles that we were all familiar with working under. So I asked Dave [Dr. Wilson]; he agreed. I asked my leadership in NHGRI; they were excited about the idea of setting up a part-time detail. I could go and immerse myself in the work of THRO in the 40–60% range of my schedule, bring back the knowledge I gained from that immersive experience, but also support the very important work that the Office was doing at the time to try to bring the research that was being done by NIH and funded by NIH to Tribal communities in a way that would benefit them. The entire time I was working with the Office, we were all working virtually, but that was a very meaningful experience for me, in terms of directing my service role in a way that was beneficial for the times we were in.

BA: Definitely. I also know that, from your own story, training and mentorship have been important in leading you in the various directions you’ve taken, but they’ve also been an important part of you giving back to trainees and mentees. What made that aspect of the job so important to you, and how have you approached mentorship?

SH: Every summer at the NIH, with the possible exception of this summer, just because of pauses, there’s this infusion of fresh excitement as the summer students who have successfully applied to the Summer Internship Program at the NIH join us. There’s this energy and optimism that’s kind of infectious. I love being able to be in this space of trainees who bring a sense of optimism about being able to change the world. It’s a little bit sad as a mentor when you realize your job is to help funnel that into an answerable research question. We are not going to save the world this summer, but here’s what we’re going to do to get you on the path towards changing it. I’m saying that because I love being in a culture of education and training and intergenerational spaces—that’s foundational.

Looking back at my own career trajectory—as somebody who is a product of a public school system, a university (Brandeis University) that is fairly well known but doesn’t make it into the top-ten list of elite institutions that many people look at when they’re kind of flipping through to select from trainee applications, as somebody who couldn’t afford graduate school and has benefited from federal programs of loan repayment—I know that I have carried that with me in how I’ve approached training. I have always been the person at the table who has encouraged us to look beyond the status of the institution, and to look specifically at institutions that have not been on our radar when assessing the quality of trainees. And even disciplines that we’re not used to selecting from because I love that dissent and interdisciplinary focus. I think it’s really important to understand what having those different perspectives at the table at all levels brings to enriching the quality of the scientific questions we ask, the quality of answers that we generate to those questions, and the way that we all grow as we learn from each other.

I have always been very lucky to be part of programs that have enabled us to do that. The IRB internship program was an example of being able to bring in trainees for shorter periods of time in an internship model to have access to the resources of the NIH. The program recognized that being able to shadow and learn the ins-and-outs of the IRB is an incredibly important model that’s right there for people to access but doesn’t necessarily fit into the types of curriculum that we’ve developed for other career paths in bioethics and research ethics. That also brought a lot of rich international and cultural diversity to the department. We learned how to be a more welcoming department, like different ways to greet each other than a handshake when we had a few IRB professionals from Liberia who had learned to do things like bump elbows or to greet each other with a hand wave rather than shaking hands, because of the risk of transmission of Ebola at the time. It involved really immersing ourselves in a more expansive understanding of the history of the federal government’s relationship with Tribal communities in the United States. Bringing in trainees and interns from Indigenous communities within the United States motivated us to grow our expertise and our cultural capacity. I humbly recognize that I made many mistakes in the beginning, because I thought that diving in was the best way to go and really had a lot of learning to do, that I did and now try to bring others along at every opportunity.

The other thing I wanted to mention about mentorship is that I now am approaching mentorship from a more pointed perspective. I’m trying to work more closely with trainees who are from US Tribes because I have developed those relationships and that expertise. I really want to keep a deliberate focus on that, to keep that going forward, even in my various different roles. I was able to mentor a summer student from the Navajo Nation when I was on detail with THRO. I’m currently working with an Indigenous post-bac in our department, and I’m continuing to collaborate with her, even as I change roles. I have a rule of thumb that I won’t work on topics of relevance to Indigenous communities without partnering or collaborating or co-authoring with members of those communities, and I include trainees in that as well. I learn so much from our trainees, and it’s definitely a two-way street. And so that is the approach that I am now and will continue to take with mentorship in a very deliberate way.

BA: Thinking about the new role you’re taking on, can you describe what you’re up to now that you’ve stepped back from your full-time position here at the Department of Bioethics and NHGRI?

SH: Yeah, I am a Special Volunteer on a part-time basis with the NIH Tribal Health Research Office, where I’m very grateful to be able to work on some ongoing initiatives that I had started back on my first detail, to really help see them through. There are two major projects that I’m helping out with. One is a new emerging intramural IRB policy. We talked earlier about the NHGRI IRB, but there’s been a huge reorganization over the years, and the IRB system for the intramural research program is now centralized under the Office for Human Subjects Research Protections. There’s been a working group with that Office to develop a new policy that will really formalize the ways in which intramural researchers are expected to work and get permissions from Tribal communities before engaging in Tribal research, whether it’s on Tribal lands or with Tribal citizens. I’m working with THRO to operationalize that policy and to help conduct the reviews of studies that are going to be going forward. It hasn’t quite been finalized, so I won’t go into the details, but it’s been talked about at public meetings of the Tribal Advisory Committee, so I can tell you that much.

The other project that I’m excited to be working on has also been an ongoing working group to develop an Indigenous data sovereignty policy that details the expectations that NIH has for its own scientists, whether intramural or extraneously funded, to establish appropriate data sharing agreements and flexible arrangements with Tribes that puts the primacy on their sovereignty to determine how their own data are handled over time. There have been a series of consultations, listening sessions, and workshops. I’ll be helping to put it into writing and back to consultation and to fruition, hopefully.

BA: They both sound like great opportunities to synthesize all of the work you’ve done throughout your time at NIH. I want to move to some bigger picture questions. Thinking just about the Department of Bioethics, what changes have you observed throughout your time here, and what has stayed the same?

SH: What has stayed the same is the collegial, interdisciplinary, open-door nature of the department, which is something I was always impressed with from the very beginning. When I came into the department, Zeke Emanuel was the director. I know that he’d even worked with an architect to create the structure of the department suites in a way such that we had communal gathering spaces and that all of the offices had windows so that it was clear that people were in and that we weren’t hiding. And although there are necessary hierarchies to demarcate who is a mentor and who is a trainee, etcetera, it always felt like a less hierarchical space in a formal sense than other places I had been. It was safe to share ideas without people scrambling for co-authorship, but it was also a highly collaborative place where there were always interesting opportunities to plug into a project and to become a collaborator on it. There was always good communication between different disciplines and appropriate challenge of understanding. In my case, the philosophers would ask, why do we care about these data? Those are really important questions, because why would you collect it if you didn’t know how it was going to be used? But also, social scientists would be putting a spin on philosophical hypotheticals and saying there’s a real-world context here that one is missing. I love those kinds of discussions, and I think that has been consistent throughout.

Changes that I’ve seen… The department has grown and has added faculty over time. I think we’ve evolved from everybody who has stepped foot in the door. There’s a program of visiting scholars who come in and leave an imprint, become collaborators and leave us with a new way of thinking of things. I think there’s just been an evolution in the way that we approach questions, through our openness to consider more social science and sociological approaches to bioethics and their contributions to the bioethical discourse. I struggled with answering the “so what” questions when I first came into the department with my public health training. We’ve since added faculty who have literally the exact same training as me, who I went through the [Johns Hopkins] program with, like Holly Taylor, but also, I think, over time, when we’ve demonstrated the value of collaborating and kind of having these back-and-forth conversations.

There’s a little bit of a difference in the culture of the department. I think Zeke used to refer to the culture of the department as “combative collegiality,” and—seeing your facial expression there, that feels startling, but then you kind of understand where he’s coming from. I don’t think I have to hide that he has sort of a bold, brash personality and that was in keeping with his sense of the culture of the department. It was still collaborative, but I think there’s a different kind of warmth that Christine Grady brought to the culture of collaboration, and the way in which she looks out for all of us. I’m not going to weigh in on which is better and which is worse, but it’s just different, since that’s the question that that you asked. Definitely a different style of leadership. I think it’s been a longer period of time—I’m pretty sure if I looked at dates that would be correct—that I’ve worked with Christine. Her success is a testament to her deep relationships and her long-standing relationships with so many people in the Clinical Center and at the NIH. That’s what really made us very successful. I haven’t used the term “embedded bioethicist” yet, but the idea of working alongside and with research teams and clinical staff to create this culture of ethics is a style that I thrive in and have enjoyed being a part of.

BA: What do you see as some of the greatest challenges or opportunities confronting bioethics in the next few years?

SH: I think one big challenge for the field of bioethics is going to be funding, but I think that’s a question for the sciences more broadly. The notion I’m used to is an environment in which there is a congressional carve-out of a percentage of funding that goes along with the budget for the National Human Genome Research Institute to embed bioethics research. The Ethical, Legal, and Social Implications, or ELSI Program, is founded on this premise that bioethics needs to be embedded in the study of a science. I don’t know how durable that model is as things are shifting and tough decisions are being made about priorities. I hope that bioethics will continue to have that foothold.

But in fairness, I think the questions that bioethicists should be addressing need to evolve beyond the ethics of genetics research, as it’s currently funded. I think these broader questions of global justice, the relationship between environmental justice and genetics, the more complex contributions to health, questions of solidarity and how different communities relate to and support each other, to health disparities and what the most important determinants of health are—these are the biggest bang for the buck. I think looking at questions that haven’t traditionally been within the purview of bioethics per se is a challenge that we should be willing to take on.

BA: Within that context and based on your own experience, what advice do you have for aspiring bioethicists early in their education or careers?

SH: A couple of points that I like to share with trainees: I think grantsmanship is something to learn—the art of applying for grants and not being afraid to make the case that your research is valuable in the context of a broader research funding program. I forgot to mention when I applied for the loan repayment program, some people told me that I was the first person ever to apply successfully with a social science project in bioethics. It was that public attitudinal survey, which wasn’t the kind of research that traditionally had been awarded loan repayment programs. I was very fortunate to have people who were savvy, who had just come from the extramural world and who helped me with that framing. I learned none of that in graduate school. I had applied for some very small dissertation grants, but I think understanding that world is very important, even for a philosopher in bioethics. I think the reality of funding and the ability to ask more diverse questions depends on that.

I think humility in what one is willing to take on and what has to be included in a course of study is also important. I still value the fact that I took biostatistics classes that I technically never use, but I can read a paper that is more technical than I would have been able to otherwise. It’s not so much humility as an openness to understanding that you don’t understand how the pieces are going to fit together, and that’s okay. Having a goal is a very big funnel that you’re working towards.

I also think networking at every opportunity is important. Being open to all the advice you can get, and networking, even if it doesn’t come naturally, is probably the most valuable thing in my career path. And also taking stock: we’re in a time where people are asking themselves hard questions about what they’re willing to do, what work is meaningful to them. I guess I can speak for myself and say that that is in part why I decided to step aside from a leadership position and focus in on some of the projects that I was neglecting that were most important to me. Being willing to course-correct is hard and sometimes economically impossible, but an important thing, especially for a bioethicist whose job it is to think about doing the right thing. I think that’s something I’ll throw out there as well as worthy of your time.

BA: Great, thank you. Do you have any particular memories or funny anecdotes that stand out from your time in the Department of Bioethics?

SH: I have so many good memories. So many of them are organized around food, which really speaks to the value of breaking bread. That plays out so importantly when doing work with communities, but among ourselves as well. I think teatime, the holiday party, the potlucks, all of those sorts of things really speak to the kind of department that we are. There’s a lot of laughter in the department, and I think all of the informal ways that we gather at lunchtime and talk about movies and actually share jokes and trivia are fun memories. No one thing funny that stands out, but a lot of happiness and warmth.

BA: Is there anything else you’d like to add or any questions you wished I’d ask you?

SH: No, you covered all the questions I can think of, and I managed to slip in a few things along the way. I really hope that going forward, even though I’m not going to be as much of a part of the department—although I’ve been informed that I’m absolutely expected to drop in for tea and to stay involved in this sort of adjunct capacity as time permits—I hope the character of the department is able to endure as a really important component of the Clinical Center and of the culture on campus, especially in terms of its way of approaching embeddedness and collaboration, being a part of the conversations. We’ve never been the type of group to send down dictums, but to really collaborate and develop answers from within and as part of—working in real time between tough questions and then doing more scholarship that helps move that conversation forward; working in that intertwined way and interdisciplinary ways and inclusive ways; continuing to strive to be better equipped to incorporate a wide range of perspectives, including those that have been missing from the conversation. I really hope that that will continue to be a part of the character of the department going forward.

BA: Well, thank you so much for taking the time to speak with me. I really enjoyed walking through your incredible tenure here at NIH and look forward to the project you have coming up.

SH: Thank you so much and thank you for taking this on. I think the department is very special, and I think it’s worthy to document how we got here, so I’m excited that you’re doing this.

BA: Thanks.