In this edition of Research Ethics Reading List, we feature books on HIV/AIDS and research. (Book description copy comes courtesy of each book’s publisher or author website where possible.) Are there books related to HIV/AIDS and research ethics that you want to share? Tell us about them in the comments!
Impure Science: AIDS, Activism, and the Politics of Knowledge (1998)
Epstein shows the extent to which AIDS research has been a social and political phenomenon and how the AIDS movement has transformed biomedical research practices through its capacity to garner credibility by novel strategies. Epstein finds that nonscientist AIDS activists have gained enough of a voice in the scientific world to shape NIH–sponsored research to a remarkable extent. Because of the blurring of roles and responsibilities, the production of biomedical knowledge about AIDS does not, he says, follow the pathways common to science; indeed, AIDS research can only be understood as a field that is unusually broad, public, and contested. He concludes by analyzing recent moves to democratize biomedicine, arguing that although AIDS activists have set the stage for new challenges to scientific authority, all social movements that seek to democratize expertise face unusual difficulties.
Avoiding polemics and accusations, Epstein provides a benchmark account of the AIDS epidemic to date, one that will be as useful to activists, policy makers, and general readers as to sociologists, physicians, and scientists.
Lethal Decisions: The Unnecessary Deaths of Women and Children from HIV/AIDS (2017)
Arthur J. Ammann
This first-person account by one of the pioneers of HIV/AIDS research chronicles the interaction among the pediatric HIV/AIDS community, regulatory bodies, governments, and activists over more than three decades. After the discovery of AIDS in a handful of infants in 1981, the next fifteen years showed remarkable scientific progress in prevention and treatment, although blood banks, drug companies, and bureaucrats were often slow to act...Inexplicably, the World Health Organization recommended withholding treatment for the majority of HIV-infected individuals in poor countries, and clinical researchers embarked on studies to evaluate inferior treatment approaches even while the pandemic continued to claim the lives of millions of women and children. Why did it take an additional twenty years for international health organizations to recommend the treatment and prevention measures that had had such a profound impact on the pandemic in wealthy countries? The surprising answers are likely to be debated by medical historians and ethicists.
At last, in 2015, came a universal call for treating all HIV-infected individuals with triple-combination antiretroviral drugs. But this can only be accomplished if the mistakes of the past are rectified. The book ends with recommendations on how the pediatric HIV/AIDS epidemic can finally be brought to an end.
Remaking a Life: How Women Living with HIV/AIDS Confront Inequality (2019)
In the face of life-threatening news, how does our view of life change—and what do we do it transform it? Remaking a Life uses the HIV/AIDS epidemic as a lens to understand how women generate radical improvements in their social well being in the face of social stigma and economic disadvantage. Drawing on interviews with nationally recognized AIDS activists as well as over one hundred Chicago-based women living with HIV/AIDS, Celeste Watkins-Hayes takes readers on an uplifting journey through women’s transformative projects, a multidimensional process in which women shift their approach to their physical, social, economic, and political survival, thereby changing their viewpoint of “dying from” AIDS to “living with” it. With an eye towards improving the lives of women, Remaking a Life provides techniques to encourage private, nonprofit, and government agencies to successfully collaborate, and shares policy ideas with the hope of alleviating the injuries of inequality faced by those living with HIV/AIDS everyday.
The Boundaries of Blackness: AIDS and the Breakdown of Black Politics (1999)
Cathy J. Cohen
The Boundaries of Blackness is the first full-scale exploration of the social, political, and cultural impact of AIDS on the African-American community. Informed by interviews with activists, ministers, public officials, and people with AIDS, Cathy Cohen unflinchingly brings to light how the epidemic fractured, rather than united, the black community. She traces how the disease separated blacks along different fault lines and analyzes the ensuing struggles and debates.
More broadly, Cohen analyzes how other cross-cutting issues—of class, gender, and sexuality—challenge accepted ideas of who belongs in the community. Such issues, she predicts, will increasingly occupy the political agendas of black organizations and institutions and can lead to either greater inclusiveness or further divisiveness.
The Boundaries of Blackness, by examining the response of a changing community to an issue laced with stigma, has much to teach us about oppression, resistance, and marginalization. It also offers valuable insight into how the politics of the African-American community—and other marginal groups—will evolve in the twenty-first century.
Invisible Cure: Africa, the West and the Fight Against AIDS (2008)
In 1993, Helen Epstein, a scientist working with a biotechnology company searching for an AIDS vaccine, moved to Uganda, where she witnessed first-hand the suffering caused by the HIV virus. The Invisible Cure, dramatic, illuminating and beautifully written, recounts the struggle of international health experts, governments and ordinary Africans to understand the devastating spread of HIV in Africa, and traces how their responses to the crisis have changed in light of new medical developments and political realities.
The AIDS epidemic in Africa is uniquely severe, but Epstein argues that there are ways to address this crisis that may be simpler than many people imagine. A deeply affecting story of scientific breakthroughs and false starts, and of the human costs of policymakers' missteps and inaction, The Invisible Cure will change the way we think about AIDS, a disease without precedent.
How to Survive a Plague: The Inside Story of How Citizens and Science Tamed AIDS (2017)
...the riveting, powerful and profoundly moving story of the AIDS epidemic and the grass-roots movement of activists, many of them facing their own life-or-death struggles, who grabbed the reins of scientific research to help develop the drugs that turned HIV from a mostly fatal infection to a manageable disease. Around the globe, the 15.8 million people taking anti-AIDS drugs today are alive thanks to their efforts...Weaving together the stories of dozens of individuals, this is an insider's account of a pivotal moment in our history and one that changed the way that medical science is practiced worldwide.
And the Band Played On: Politics, People, and the AIDS Epidemic (1987)
Upon it's first publication...And The Band Played on was quickly recognized as a masterpiece of investigative reporting. An international bestseller, a nominee for the National Book Critics Circle Award, and made into a critically acclaimed movie, Shilts' expose revealed why AIDS was allowed to spread unchecked during the early 80's while the most trusted institutions ignored or denied the threat. One of the few true modern classics, it changed and framed how AIDS was discussed in the following years.
Tell us about books you've read related to HIV/AIDS and research ethics, and/or share your reflections in the comments!