In "Mortal Secrets: Truth and Lies in the Age of AIDS," (Johns Hopkins University Press, 2003) Dr. Robert Klitzman and Dr. Ronald Bayer interviewed HIV-positive men and women to try to find out how people make difficult decisions about disclosing their health status to lovers, parents, friends, and co-workers.
Understanding how people infected with HIV are dealing with disclosing their status to their sexual partners may be crucial to slowing down the growing rates of infection in the United States, the authors say.
Since the AIDS crisis began in the early 1980s, efforts at slowing HIV's spread have generally emphasized the need for uninfected individuals to protect themselves. But progress has stalled. Recent studies indicate that HIV prevalence is rising among urban gay men, and the prevalence is mushrooming in sub-Sahara Africa.
Has the need for self-protection been overemphasized without enough attention being paid to the critical importance of disclosure? A 2000 Institute of Medicine report thought so and concluded that an infected person's efforts to prevent transmission have been underemphasized. "We wanted to recognize the varieties of human sexual experience," says Dr. Bayer, professor of sociomedical sciences at the Mailman School of Public Health, "and present a picture of moral decision-making by HIV-positive individuals." For much of the book, the authors let interviewees tell their own stories.
"Almost all participants struggled to act in a way they felt they could live with morally," says Dr. Klitzman, assistant professor of psychiatry at P&S and co-director of CUMC's Center for Bioethics. "But, especially as witnessed by rising rates of HIV, there were exceptions."
In an extreme example, one man said, "I told my wife I have HIV but not the other chicks I sleep with."
"That was one of the more disturbing comments I heard during my interviews," says Dr. Klitzman, who, with Dr. Bayer, talked to nearly 80 HIV-positive individuals.
Another finding was that long-term relationships differ from one-night stands. "In ongoing intimate relationships, most people thought lying was morally deplorable, but short-term relationships didn't seem to require the same level of openness and honesty," Dr. Klitzman says.
Many people felt that as long as they used condoms, disclosure to more casual partners wasn't always needed. One man, a gay psychologist, said: "My feeling about it was always that as long as I felt I was being safe, and I didn't feel I really knew them, then I felt okay."
Sometimes, people relied on implicit disclosure. For instance, one woman said her partner told her he didn't expect to live to age 35. "In retrospect she said she understood he was referring to the fact that he had HIV, but there could be lots of reasons someone would make a statement like that," Dr. Klitzman says. "Indecipherable coded communication is not communication at all," Dr. Bayer adds.
"We can't say people should always tell all the time," Dr. Klitzman says. "For some women, for example, disclosure may make their partner violent. But if people don't tell, they need to understand the consequences of their actions more than they do now, as our interviews suggest."
Drs. Klitzman and Bayer also feel that doctors need to talk more to their patients about the need for honesty. "Only about one-third of HIV-positive people have been counseled about safer sex by health care providers," they say, "and half have never been spoken to about the need for disclosure."