Amy Ben-Arieh (LAW’07, SPH’08)

biomedical ethics

‘Our Work is More Important Now, Than Ever’

Amy Ben-Arieh, an alum of BU’s public health and law dual degree program, responds to questions about her passion for bioethics and discusses her new role as the executive director of The Fenway Institute, one of the world’s preeminent LGBT health and HIV research, education, and policy organizations.

For Amy Ben-Arieh, an alum of the law and public health (JD/MPH) dual degree program at Boston University, the universe of LGBTQIA+ research feels like home.

“Stars aligned,” Ben-Arieh says of her recent appointment as the new executive director of The Fenway Institute, one of the world’s preeminent LGBT health and HIV research, education, and policy organizations. “It is rare in this life that you can spend your time doing what you love, what you are passionate about, and get paid to do it.”

Ben-Arieh credits her passion for the queer community and keen interest in research ethics to her upbringing. Her childhood was split between Minnesota, where she lived with her parents and attended school, and Maine, where she often visited her grandfather in the coastal, resort town of Ogunquit. Her grandfather aside, she says, both her family and the Ogunquit community are “very queer.”

Something was happening in Ogunquit in the late 1980s and early 1990s, though, recalls Ben-Arieh, “People who were there one summer were not there the next summer—people we knew were disappearing.”

A mystery to many at the time, the origin story of the AIDS epidemic in the U.S. is now well-known: thousands of previously healthy, young men suddenly died of rare, aggressive cancers and pneumonias. The vast majority of those affected were gay.

When a personal friend was diagnosed with AIDS and later died right around the time that highly active antiretroviral therapy was first becoming available, the senseless loss prompted Ben-Arieh to join the Minnesota AIDS Project (now Rainbow Health Minnesota). Every Tuesday night, from middle school through her undergrad at the University of Minnesota, she helped stuff envelopes to solicit donations for an annual walk to end AIDS. “It was this consistent thing in my life,” she says.

Another significant influence in Ben-Arieh’s life was that of her “adopted” grandparents, an older couple who took her family under their wing when they first moved to Minnesota and had no other connections in the area. They shared their experiences as Holocaust survivors—including participation in the Nuremberg Trials—with Ben-Arieh, who was particularly fascinated by the Nuremberg code, a set of principles articulated in the aftermath of the Second World War to guide the ethical conduct of human-subjects research. She decided at a young age, she says, to make research ethics the focus of her career, and went on to study philosophy in college before coming to BU to complete a JD/MPH.

“I was very interested in the faculty, but also, at the time, [BU] was one of the very few schools that was doing the joint degree in law and public health, and I really saw that as my path forward,” says Ben-Arieh, who graduated from SPH in 2008. “[I saw] medical-legal partnerships as really crucial to how healthcare was going to be functional in the future, and I wanted to prepare for that.”

After graduation, she worked her way up to chair of the Institutional Review Board (IRB) committee at Mass General Brigham (MGB), where she was responsible for all human-subjects research conducted at MGB-affiliated institutions, including Mass General Hospital, Brigham and Women’s Hospital, McLean Hospital, and Spaulding Rehabilitation Hospital, among others. Although the role encompassed nearly everything she had dreamed of, in 2016, when she saw there was an opening at Fenway Health, “it was clear I had to jump,” she says. “As much as I loved my time at MGB, that was where I knew I wanted to be.”

Ben-Arieh has now been with Fenway Health for seven years and counting.

Q: Reflecting on your time as a student, which SPH professors or courses had the most notable impact on your career trajectory? How do you feel your education at BU, particularly in the MPH program, prepared you for your new role?

Wendy Mariner and George Annas literally wrote the book on public health law. I think when folks were talking about vaccine mandates and all these things, the first person I [contacted], even 20 years later, [was] Wendy, being like, what do you think about this? Because that is who I wanted to hear from. As someone who has thought so deeply about these issues, I was confident that [she] would not [have] a reactionary response. In terms of how the degree prepared me, I think that that public health lens is crucial if you have a community focus. Community health, environmental health, they are so solutions-oriented and people-centric; it is a way to center the things that are important. Many of my colleagues also have MPHs. I appreciate the outlook; I think there is incredible intellectual curiosity, a real commitment to doing good in the world, to living into your values. When I see that someone has intentionally studied public health, it is expressing a lot to me about their commitment to community.

Q: Fenway Health has a rich history of advocating for LGBTQIA+ rights. What do you see as the most pressing issues facing sexual and gender minority populations today and how do you plan to address them?

That is a really big question. I think one of the biggest challenges we are facing right now is just the larger political climate. To a degree, we are insulated in Massachusetts, but no one is an island. Research does not happen in one location at one moment; we have collaborators around the country, and we are at a point now where the way we ask questions, the words that we use, how we write grants, all of it is being impacted by this overarching climate of intolerance. Folks are worried that it is going to impact academic freedom and their pursuits going forward.

I speak on this topic quite a bit and inevitably, the folks who most want to talk about it are the folks in the impacted states, because we are still there, LGBTQIA+ folks are still living in those communities, we still have healthcare needs, and so, figuring out how to navigate in this new environment is really important.

Q: What are some of the areas of research that you hope to prioritize during your tenure as executive director?

We are very focused on health equity matters and issues that are impacting Black, indigenous, or people of color. My favorite research story from Fenway is the pre-exposure prophylaxis study. The Fenway Institute was involved in the earliest study that was rolled out in the United States around a pill that you could take to not contract HIV. Since that time, we are now all the way to a place where people can get an injectable a few times a year and not get HIV. We have gone from the research on that all the way through [to where] we have now implemented it at our community health center. To watch that happen has been so gratifying.

Another thing, that my colleague Taimur Khan is talking about a lot, is DoxyPEP. We are having a resurgence of a lot of STIs—syphilis, gonorrhea—around the country, and DoxyPEP is such an important tool to prevent illness. I think it is really going to change the landscape. [DoxyPEP] is post-exposure prophylaxis, so if someone is out on weekends and has had unprotected sex, or thinks they are somehow at risk, they can go to their doctor on Monday and say, “Hey, this is what happened,” and they can get DoxyPEP. It has been used more widely in Europe than the United States. It is a big deal; it is such an important tool.

Q: What are some of the strategies that you plan to use to engage the local community to ensure that your work at The Fenway Institute reflects the needs and voices of the people you intend to serve?

One of the things that—I am going to lean on my IRB background a little bit—we look for in our research project is how the community was engaged, and the decisions around it. We are always looking for: What was your community engagement strategy? Did you have an advisory board? What did they advise on? How did they meet? How do you intend to disseminate the information afterwards? I think that is a piece that often gets lost. We get so focused on—when I say we, I mean the broader scientific community can get so wrapped up in enrollment, recruitment, getting through the study, and then publishing, that that last piece, that connection of returning the results to the community, interpreting it for the community, gets lost. And that is something that we really focus on a lot at Fenway: What is that communication plan?

Q: You mentioned the dissemination of information being really important to your mission at The Fenway Institute. Have you encountered any challenges around misinformation in the community, and have done any work around combating misinformation?

This is not TFI-specific, but certainly, there is a lot of community mistrust of science. We have a lot of very prestigious academic institutions in and around Boston who have not always served every member of our community equally and with respect, and so, that mistrust is warranted. And our focus there is really around being accessible, and accessibility and community competency does not just mean splashing rainbows on things and having a lanyard that says my pronouns. It is really about accessibility; it is about universal design. Can people come in? Can they read your signage? Do you have translators? Thinking about accessibility in a multidimensional kind of way. We really work on that with all of our research in the same way that Fenway does in their care.

Q: What advice would you give current students at BUSPH who are interested in pursuing careers that focus on LGBTQIA+ health advocacy and research, and similar things to what The Fenway Institute does?

Show up, show up at all the events, everything that interests you, meet all the people, this is not a place where shyness serves. Also, serve on an IRB. Everybody should serve on an Institutional Review Board. If you are at all interested in health and equity and justice, that is where the rubber meets the road. And they always need community members with diverse voices, so they need your voice, too. It is a deeply gratifying, very tangible way that you can be involved in the research enterprise.