Bioethics Forum Essay
AIDS in New York: The First Five Years is an exhibit running this summer at The New-York Historical Society, an organization so venerable that its name reflects how the city’s name was originally spelled. The exhibit works on several levels: historically, as a story about how one city and region awoke to the emerging epidemic; politically, as a story about how local activists got organized; sociologically, as the gay community, the medical community, hospitals and congregations, bathhouses and bars, began to be profoundly and permanently changed. It works visually and emotionally, too. As someone who worked in an AIDS service organization in the late 1980s and early 1990s, I was reminded, powerfully, of what that pre-antiretroviral, pre-Internet erafeltlike, about how people shared information: we read a lot of newsletters, some of which are on display in the exhibit.
Also on display is a copy of the November-December 1984 issue of IRB: Ethics & Human Research. The lead article in that issue was “Guidelines for Confidentiality in Research on AIDS,” by Ronald Bayer, Carol Levine, and Thomas Murray. This artifact is presented as historically significant in two ways: as a landmark consensus document about how people with AIDS should be treated by clinical researchers, and as an early example of the role of private philanthropy in research and policy on HIV/AIDS. A nearby placard describes how the Charles A. Dana Foundation “provided money to [T]he Hastings Center, a noted bioethics think tank, to undertake a project on confidentiality in AIDS research.”
Doing AIDS work, when I was very young and freshly trained in the humanities, introduced me to two sets of questions: What is the experience of living with life-threatening illness, of facing uncertainty and mortality, like, and how should this experience be represented? And how should the goals of equality of persons and equity in resource allocation be balanced across groups with similar but different needs, different amounts of power, and different priorities and desires? These questions continue to be my constant companions in doing bioethics work. (The other personal legacy of those years – as the exhibit suggests – is grantwriting, as an ever-practical application of an English major.)
Nancy Berlinger, a research scholar at The Hastings Center, is an author of The Hastings Center Guidelines on Decisions on Life-Sustaining Treatment and Care Near the End of Life and co-director of the Center’s Undocumented Patients research project.