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Mortal Secrets

Truth and Lies in the Age of AIDS

In the era of the Internet and Oprah, in which formerly taboo information is readily available or freely confided, secrecy and privacy have in many ways given way to an onslaught of confession. Yet for those who are HIV positive, decisions about disclosure of their diagnosis force them to confront intimate, fundamental, and rarely discussed questions about truth, lies, sex, and trust.

Drawing from interviews with over seventy gay men and women, intravenous drug users, sex workers, bisexual men, and heterosexual men and women, the authors provide a detailed portrait of moral, social, and psychological decision making. The interviews convey the complex emotions of love, lust, longing, hope, despair, and fear that shape individual dilemmas about whether to disclose to, deceive, or trust others concerning this disease. Some of those interviewed revealed their diagnosis widely; others told no one. Some struggled and ultimately told their partners; others spoke in codes or half-truths. One woman discovered her husband's diagnosis in a diary; when confronted, he denied it.

Each year in the United States, 40,000 new cases of HIV arise, yet approximately one-third of the 900,000 Americans who are infected do not know it. As treatments have improved, unsafe sexual behavior has increased and efforts at prevention have stalled. Many of those infected continue to fear and experience rejection and discrimination. Addressing broad debates about the nature of secrecy, morality, and silence, this book explores public policy questions in the light of the nuanced, private decisions that are shaping the course of an epidemic and have broader indications for all.

About the Authors

Robert Klitzman, M.D., is an assistant professor in the department of psychiatry and is codirector of the Center for Bioethics at Columbia University. He is the author of The Trembling Mountain: A Personal Account of Kuru, Cannibals and Mad Cow Disease (2001), In a House of Dreams and Glass: Becoming a Psychiatrist (1996), Being Positive: The Lives of Men and Women with HIV (1997), and A Year-long Night: Tales of a Medical Internship (1989).Ronald Bayer, Ph.D., is a professor in the Department of Sociomedical Sciences at Columbia University's School of Public Health. He is the author of AIDS Doctors: Voices from the Epidemic(2000), and Private Acts, Social Consequences: AIDS and the Politics of Public Health (1989).

Reviews

"An engaging consideration of the competing and sometime contradictory values that influence disclosure decisions in the lives of HIV-positive adults... [and] a stimulating and deeply satisfying discussion of the tensions inherent in disclosure stories."

- Robert Kertzner, M.D. - American Journal of Psychiatry

"An in-depth look at the motivations, beliefs, and practices of those who must decide to get tested and if positive, whether or not to disclose, and when... Mortal Secrets delivers a powerful message using the voices of those most affected."

- Lisa K. Waldner, Ph.D. - Journal of the American Medical Association

"Nonjudgmental... Readers may find themselves with newly gained compassion and understanding for the dilemma of when and how to disclose HIV status."

- Marla J.Gold, MD - Annals of Internal Medicine

"This is an interesting book that social workers need to read so as to understand their clients concerns. A recommended book for all academic libraries."

- AIDS Book Review Journal

"Klitzman and Bayer provide an engaging consideration of the competing and sometimes contradictory values that influence disclosure decisions in the lives of HIV-positive adults."

- Focus: A Guide to AIDS Research and Counseling

"It is an aim that succeeds to an extraordinary degree... So well thought-out is this study, and so well presented are the accounts of the participants, that I put the book down with a real—and rare—sense that my understanding had grown and my thinking about the ethics of HIV—in particular the responsibilities of those infected—had shifted... The examples given here put such bald statements into a new context, and make the social and cultural factors that shape the pandemic seem vivid and emotionally real. Such vividness serves powerfully to enhance understanding."

- Tamsin Wilton - Journal of Neurology, Neurosurgery and Psychiatry

"This is a very interesting and thought-provoking book, which utilizes, but also moves beyond, the interview data in order to address broader debates around complex issues of sexuality and morality."

- Elaine Denny - New Genetics and Society

"A useful resource for both clinicians and laypersons, and I recommend it as a highly accessible and expertly written book."

- International Review of Psychiatry

"Mortal Secrets is a book for anyone desiring to move forward in the fight against the illness, not the people."

- Erica Prigg - Health Communication

Endorsements

"Mortal Secrets takes up the question of truthtelling, but not from the philosopher's armchair. Klitzman and Bayer have confronted truth and lying face to face with sufferers from, and in some cases, unfortunately, vectors for the great scourge of advanced countries in our age. What they discovered in these encounters will help us to survive it, but its implications for how we can and should reveal the truth reach far beyond AIDS."

- Melvin Konner, M.D., Ph.D., author of The Tangled Wing: Biological Constraints on the Human Spirit (revised edition) and Unsettled: An Anthropology of the Jews

"In Mortal Secrets, Klitzman and Bayer explore how we weigh the benefits of secrecy against the hazards of truth telling. This is a timeless question that is destined to become more and more important as the incidence of HIV rises. I was moved by the wonderful voices captured in this book, the voices of people wrestling with issues that are at the core of relationships; Mortal Secrets is illuminating and groundbreaking."

- Abraham Verghese, author of My Own Country: A Doctor's Story

"In this pioneering work, Bayer and Klitzman shed light not only on the complex and poorly understood world of communicating about HIV but also on the realities of morality as it is lived in the real world of frail and fallible human beings trying to talk about the most intimate matters imaginable. It is easy to advise our children and one another to always tell the truth. As Mortal Secrets reveals, that injunction can be and is applied in a variety of ways and with great nuance when the subjects at hand are sex, infection, and the transmission of disease. This study shows in ways poignant and telling that being ethical, while desirable, is neither simple nor easy."

- Arthur L. Caplan, University of Pennsylvania

"The ethical dilemmas of modern life are all too often discussed in general terms via presumptive rules and imagined examples. In Mortal Secrets, Klitzman and Bayer describe HIV-positive individuals struggling to decide when and when not to inform lovers, relatives, or friends of their condition through the troubled, eloquent, and above all concrete testimonies of those individuals themselves. The result is a powerful and moving portrait of moral deciding as it actually happens—practically, specifically, in the midst of fear, suffering, and the incertitudes of love."

- Clifford Geertz

"The women and men who people the pages of this book are not philosophers or humanistic scholars. But out of their lived experiences as individuals infected by HIV, or as partners of those who are, they speak with wrenched insight and authority about the deep and complex moral issues with which their situations have confronted them. Through the medium of their startlingly frank interview-testimonies, we hear them grapple with questions about truth and lies, candor and deception, secrecy and disclosure, silence and communication, physical and psychic intimacy, risk and safety, the reciprocity of trust, and responsibility for the protection of self and of known and unknown others. These questions are not confined to the realm of HIV/AIDS. They are fundamental to the viability and meaning of human relationships, and to life in society."

- Renée C. Fox, University of Pennsylvania
Johns Hopkins University Press
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