Several recent news reports have drawn comparisons between the response to Ebola and the response to AIDS in the early days of that epidemic. In both cases there were questions about balancing public health safety against civil liberties, the obligations of health care workers, and ethical protocols of vaccine and drug trials. Hastings Center projects in the 1980’s were groundbreaking in identifying ethical issues raised by AIDS and helping to establish public health policies that protected people’s civil liberties and privacy while enabling research, diagnosis, and treatment to proceed. Publications from these projects provide historical perspectives, and they reflect similarities and difference in the responses to two deadly infections that caught the world off guard.
The Hastings Center’s work on AIDS established that there were ethical issues in understanding and responding to this new and frightening infectious disease, recalls Carol Levine, a Hastings Center Fellow who led the Center’s AIDS research and was awarded a MacArthur Foundation Fellowship for her work in AIDS policy and ethics. Many of the same ethical concerns raised by AIDS also apply to Ebola.
Public Health and Civil Liberties. Once screening techniques for the AIDS virus were developed in the mid-1980’s, there were calls to quarantine those infected.
- Questions about quarantine. With AIDS, the central question was whether it was fair to restrict the liberties of everyone who was infected when only a few of them would engage in behaviors that put others at risk. The Hastings Center and public health officials concluded that this was not justified to control the spread of the virus. Ebola is more readily transmitted and quickly fatal than AIDS, therefore there is consensus that people who are infected must be kept in isolation for treatment. But there is significant disagreement about whether people who have been exposed to Ebola patients should be quarantined. The U.S. Centers for Disease Control and Prevention recommends that state or local health departments monitor and test people who have had direct contact with a Ebola patients (such as touching their skin or blood). But several states, including New York, New Jersey, Illinois, and Florida, have announced plans to quarantine some health care providers and others exposed to Ebola. These plans have met with strong criticism by public health experts and bioethicists, as well as AIDS activists, on the grounds that 1) mandatory quarantine of people without Ebola symptoms is not warranted to contain the spread of the disease, 2) it might discourage U.S. health care workers from volunteering where they are desperately needed to fight Ebola in West Africa, and, therefore, 3) it is an unnecessary infringement on civil liberties.
Risk to Health Care Workers. Those who care for patients with infectious diseases assume some risk in becoming infected, but how much risk is too much?
- Professional obligations. With AIDS, a key question was whether health care workers had a professional obligation to treat people infected with HIV, the virus that causes the disease. “While the American Nurses Association quickly took the lead in reaffirming a commitment to promoting patients’ welfare even at some risk to the nurse’s life and health, the professional organizations of medicine and dentistry were more circumspect,” states the introduction to AIDS: An Epidemic of Ethical Puzzles, a collection of articles from the Hastings Center Report. “For these professions, an unqualified loyalty to patients created a tension with professional autonomy, the freedom to choose who to serve and to practice as one wishes.” As a result, many health professionals refused to treat HIV-positive patients.
- CPR: questions about safety and futility. With both AIDS and Ebola, medical professionals questioned whether cardiopulmonary resuscitation posed too great a risk of infection to health care workers. “We must now consider whether unilateral do-not-resuscitate orders are justified” on Ebola patents with controlled bleeding, through which the virus can spread, writes Joseph J. Fins, chief of medical ethics at Weill Medical College of Cornell University, in Bioethics Forum, the Hastings Center’s blog. However, Fins rejected similar arguments when he was a resident caring for patients with AIDS. He cites differences between resuscitation of patients with AIDS and Ebola. First of all, the risk of contagion is greater with Ebola patients nearing death than it is for AIDS patients. Second, patients with AIDS who were saved by CPR could benefit from life-saving medications, but there is no such therapy for Ebola. “This makes resuscitation an act of futility,” writes Fins, who is a Hastings Center board member and Fellow.
Vaccine and Drug Trials. Early in the AIDS epidemic, people with AIDS were afraid to volunteer for research because of fear that information about them would not be kept confidential and might stigmatize them. “The epidemiological research to discern patterns of transmission had ground to a halt,” recalls Tom Murray, President Emeritus of the Center. Murray, Levine, and Ronald Bayer led a Hastings project that aimed to restart this research by coming up with ethical guidelines that would build trust between potential research subjects and scientists.
- Ethical guidelines for AIDS research. The Hastings Center developed special guidelines for AIDS research to protect the privacy of volunteers and the confidentiality of information collected about them for research. They included recommendations that institutions have a clearly stated and enforced policy for addressing the security of records and the recommendation that informed consent is obtained from volunteers.
- Ethical guidelines for Ebola research. Trials for Ebola vaccines are slated to begin in West Africa by the end of the year, but there are ethical questions about what the protocol should be. Among the questions is whether to use the “gold standard” protocol, a randomized controlled clinical trial, in which a group of volunteers receives an experimental vaccine and a control group receives a placebo. Doctors Without Borders opposes using a placebo because vulnerable people in Ebola-affected areas “shouldn’t be led to think they are either being treated or protected when they’re not.” There are other questions about the use of unproven drugs for Ebola. In August a panel of bioethicists and infectious diseases specialists convened by the World Health Organization unanimously recommended the use of such drugs for people with Ebola, but it also said there was a “moral obligation” to “gather and share all data generated” so that they can be “evaluated scientifically to ensure timely and accurate information about the safety and efficacy of these investigational interventions.” How to put this advice into practice is still being debated by health officials, doctors, and bioethicists.