Amy Ben-Arieh, JD: At Home at the Nexus of Bioethics, Justice & Cutting-Edge Research

Amy Ben-Arieh, JD, MPH, CHPSE, is an authority on human research protections and inclusive research practices. She also is Executive Director of The Fenway Institute in Boston, a health research institute whose studies range from phase 1 HIV vaccine trials to large-scale epidemiology research focused on serving the LGBTQIA+ population and people living with HIV.

The institute is housed within Fenway Health, a federally qualified community health center where Massachusetts’ first case of HIV was diagnosed. For Amy, the setting is a constant “reminder of what’s possible through research and community focus. That’s why I’m here.”

She describes her career choice as “very intentional,” rooted in a childhood that instilled a deep appreciation for research ethics and social justice. Her parents were researchers, first at the National Institutes of Health and, later, at the University of Minnesota. Their influence and that of a close family friend—a Holocaust survivor who was involved in the Nuremberg trials—“very much informed my career path.”

By the time she was in middle school, Amy already was an HIV/AIDS activist. She went on to study medical ethics as an undergraduate and to earn Juris Doctor and Master of Public Health degrees from Boston University. In the 15+ years since then, Amy has built a national reputation as an expert on responsible, ethical research and an advocate for equitable access for the LGBTQIA+ community and other often under-represented populations.

She also is a staunch supporter of IRBs, a result, in part, of previous roles as Associate Chair of the Partners (now Mass General Brigham) Human Research Committee and, more recently, as Director of Research Compliance at The Fenway Institute. “IRBs are deeply, deeply important, and I think everyone should serve on one,” she says. “It’s a supremely human kind of endeavor, and we need everyone’s voice.”

That commitment to inclusion is one of many reasons Amy welcomed the opportunity to join the AAHRPP Board, connect with peers, and help drive discussions on engaging under-represented populations in research. As the head of a small organization with a history of advancing health equity, she brings an essential perspective. She also sees enormous value in AAHRPP’s contributions as a convener, standard-bearer, and resource.

“It is so important that we come together as a community,” Amy says, both to address high-level ethical considerations and to do the “nitty-gritty work of benchmarking and developing metrics. AAHRPP provides the forum for that.”

Equally important, she adds, is AAHRPP’s peer-driven approach. “The fact that the right people—ethicists, scientists, and other research professionals—are in the room is critical to IRBs’ acceptance of AAHRPP as a leader in advancing reliable, ethical research,” she says.

Amy Ben-Arieh, JD, will be a presenter at “My Wife Is Always the Father: LGBTQIA+ Equity & Subpart B,” (session B3, 10:30 a.m. PDT, May 23) at our 2024 AAHRPP Annual Conference, May 21-23. There’s still time to register and to hear from Amy and our other fascinating presenters.