By: Lindsey Grubbs
The commission, instituted in its current iteration by President Obama in 2009, is intended to advise the president on bioethical issues. The commission has tackled topics like the ethics of neuroscience, privacy in genome sequencing, synthetic biology, human subject research, and historic abuses, for example the unethical STD research supported by the Public Health Service in Guatemala in the mid-twentieth century.
The commission is chaired by University of Pennsylvania’s president, Amy Gutmann, and Emory’s own President Wagner serves as vice-chair. Its members include experts in law, philosophy, medicine, genetics, and beyond. The meeting on Ebola, the twentieth such meeting since 2009, took place in Washington DC on February 5th and 6th.. Transcripts and videos are available. For this meeting, the commission curated a wide range of presentations. Those giving presentations and engaging in question-and-answer sessions included past CDC director William Foege (famed for his role in eradicating smallpox), a tropical medicine specialist, a nurse who provided care to Ebola patients in Africa, a Sierra Leonean advocate for education, a medical historian, a reporter, and a Liberian immigrant and activist. Because the presentations drew on so many perspectives, the conversation was engaging, imaginative, and productive.
Session One: Ethical Issues Associated with Research in the Context of a Public Health Emergency
The first panel featured presentations by Clement Adebamowo, a professor of epidemiology and public health, Luciana Borio, the Assistant Commissioner for Counterterrorism Policy and the Director of the Office of Counterterrorism and Emerging Threats at the US Food and Drug Administration, and Nancy Kass, a professor of bioethics and public health. The most active conversations were whether or not placebos are justified in public health emergencies, what trial designs are most ethical and efficacious, and how biospecimens and data should be used. Each question asks how to deal with fear, desperation, and urgency simultaneously with the best possible science.
The session highlighted the close ties between ethical and effective scientific practice—namely, bad science cannot be ethical. For some on the panel, this meant that placebos must be used in Ebola treatment trials as they would in a nonemergency drug trial. Without comparing placebo and treatment data, there would be no way to determine the efficacy of the drug, which would in turn waste time and cost lives. However, the possibility exists that if a drug passed a certain threshold of efficaciousness beyond the placebo, the drug could be distributed to everyone involved. Ultimately, the commission recommended that, rather than a rigid form of clinical trials, the best methods be employed in ways that are rigorous, efficient, and responsive to social context, such as local perception and desire for treatment. Furthermore, all patients involved in research should be given the best supportive care possible in their location, and any gains of the research must be distributed broadly and equitably, and should benefit those who bore the burdens of the research.
While the first panel delved into the specifics of research design, the second examined broader contexts. Peter Hotez, Dean of the National School of Tropical Medicine, gave an overview of “neglected tropical diseases” that have far greater scope and death tolls than Ebola, but which fail to receive the same spotlight. Ebola, he claimed, may be the least of our worries. Helene Gayle, President and CEO of CARE USA, pointed to the need for long-term interventions, noting that the countries with epidemic Ebola were already devastated structurally and economically. She also discussed Ebola’s stigma, and its downstream effects on women’s reproductive healthcare.
Foege gave the final presentation. Budgets, he claims, are the biggest ethical issue we face—though ethicists and accountants are often natural enemies. Health and prevention do not fit a cost-benefit model because they have lasting effects beyond the scope of a short-sighted fiscal plan, and resources end up allocated too late, after a crisis hits. One directive, then, is that we need to increase our funding for the World Health Organization (WHO). According to Foege, we recoup our entire investment in smallpox eradication every three months, and to date we have seen a 140 fold return on our investment. Similarly, he believes that the biggest health problem in the world is tolerance for poverty, suggesting that it may not be ethical to let the market dictate health, since the can rich subsidize their lives with the health of the poor. Our big task, he says, is to find ways to tie the fears of the rich to the needs of the poor. We should ask ourselves what we would aspire to if we had no political restraints, and then should work toward those goals within the current system.