By: Lindsey Grubbs
The third panel elicited the only round of applause in the otherwise stoic, and occasionally tense, proceedings. One member of the commission was even moved to tears by what she had heard. Significantly, this was the panel that pulled together those with the most hands-on experience with Ebola and its repercussions, and was also the only one not dominated by people with doctorates and medical degrees. Oretha Bestman-Yates, a Liberian immigrant and President of the Staten Island Liberian Community Association, spoke of the discrimination and stigma facing her community. She lost her job and was harassed by neighbors and strangers. She worked with the New York Department of Health on Ebola education, asserting, “I’m an African, not a virus.”
Chernor Bah, an advocate for education and youth engagement from Sierra Leone, went to the impacted nations to help with community engagement. He knows all three of the nations well—born and raised in Sierra Leone, he was a refugee in Guinea and worked in Liberia for two years. He noted Ebola’s wide reach in the impacted nations, shutting down reproductive health programs, commerce, and schools; even increasing the rate of girls being pushed into marriage. The crisis, in Bah’s eyes, is not just Ebola, but a poverty, mistrust, and illiteracy.
Seema Yasmin, a medical doctor and journalist, honed in on the difficulties of communicating about health and risk, especially when communicating uncertainty. Should a news channel spend airtime debunking myths, or would that simply propagate them? Above all, she emphasized consistent, repetitive messages and the power of social media communication like Twitter chats.
Session Four: Historical, Sociological, and Legal Perspectives on U.S. Policies Intended to Prevent Ebola in the US
Medical historian Howard Markel began the final panel. In addition to holding appointments in history, pediatrics and communicable diseases, psychiatry, health policy and management, and English, he has worked with the CDC to comb through 1918 flu archives and as a historical consultant for pandemic preparation. He noted historical patterns in epidemics: economic losses, concealment, delay, and an underestimate of severity. Almost all have been fueled by poverty, and were met with scapegoating—often, novel threats are met with disproportionate panic. Concurring with Peter Hotez, he noted that many diseases off our radar are more potentially dangerous than Ebola.
University of Pennsylvania professor Dorothy Roberts suggested one reason for this overreaction by tracing the racist backdrop to perceptions of Ebola, noting that the response to the American patient Eric Duncan was out of proportion with the scientific evidence, due to the persistence of centuries-old racial understandings of disease. Even more disturbingly, she claimed, despite the stereotype that black people are more likely than whites to get Ebola or have other health problems, they still have worse access to healthcare.
Unni Karunakara, one of the earliest responders to the 2002 Ebola outbreak in the Congo powerfully observed that the distrust the local community had for health workers was justified—these intruders had swept in to investigate one disease, while ignoring other, more deadly conditions; they wore enormous protective suits; they would take away ill family members, who were often never seen again. He and his coworkers lacked the vocabulary to negotiate cultural differences between themselves and the locals, and he found that coercive and restrictive measures were counterproductive—for example, people who knew they would be screened at airports might take ibuprofen to avoid detection.
After the four panels were over, the commission held roundtable discussions to reach recommendations for the final report. In the first, Gutmann asked each panelist to give their number one suggestion for an improvement for the next public health crisis. Suggestions ranged from the very specific (Markel spoke of the need for a “civics lesson” about states rights—very few people knew, for instance, that public health is in the jurisdiction of the states, and that the CDC cannot begin to work within a state unless they receive a formal invitation, and so the organization took a lot of heat for failing to response in places they are legally disallowed from responding) to the more general (Foege called for a strengthened WHO). The following morning, after finishing up some leftover business from the previous meeting on neuroscience, the commission members workshopped drafts of recommendations to include in their report. The final recommendations are paraphrased as follows:
1) For ethical reasons and for reasons of national security, the US must engage in preparation and global coordination for public health emergencies.
2) The US must strengthen its ability to respond by increasing funding to and collaborations with WHO, empowering one health official for federal emergency response domestically and internationally, and strengthening the US Public Health Service’s deployment capacities.
3) Officials must emphasize education and communication in order to provide useful information, to articulate the values and reasoning behind public health decisions, and to minimize the stigma that often accompanies emergency situations.
4) Ethics should be integrated into every level of response, and ethics experts must be available to negotiate ethics in real time.
5) We must commit to using the least restrictive means necessary based on the best available data, and must explain the reasoning behind restrictive measures like quarantines and travel restrictions.
6) Research must use best supportive care, be efficient and effective, and respond to community needs and concerns.
7) Biospecimens must be obtained ethically, and the benefits of research that come out of them must be broadly and equitably available.
Public health ethicist Nancy Kass argued that ethics is not about pitting competing ideas against one another, but is instead about finding creative third options. This alternative arises from gathering a diverse group of people with a wide range of expertise into a room and initiating dialog. In this way, the public forum of the President’s Commission was an exemplary case of ethics at work, especially because it got beyond the typical scholarly voices to engage with those actually impacted by the epidemic. The voice with the most prestige may not be the one with the most impact. The joint expertise of the invited panel speakers and the members of the commission resulted in an eighty-page document for President Obama’s consideration, and is publicly available for educational purposes. It provides historical background on unethical liberty restrictions like the ban on immigration and US travel for foreigners with HIV, which wasn’t lifted until 2010. The report notes, “the ban continued in spite of expert opinion that it lacked scientific rationale, wasted resources, discouraged HIV testing, and perpetuated stigma and discrimination” (28). Remembering ethical errors of the past provides important perspectives, although Markel lamented our “profound amnesia” about epidemics. Hopefully the commission’s commitment to learning from past injustices will improve future epidemic responses.
Alongside attention to past trends, ethicists and health professionals must remain attuned to the specifics of each new situation. What works for respiratory illnesses will not work for diseases that cannot be transmitted through the air. What works for epidemics in rural areas will not work for those in cities. Attention to context, though, complicates preparation. Gutmann declared, “public health emergencies often occur. They occur unpredictably, but it’s predictable that they will occur.” So, our ethical duty is to lay the groundwork and form the relationships that will aid in epidemic response in the future. Combating poverty, improving health literacy, and building public health infrastructure are important steps, but plans must be flexible and responsive to the needs of impacted communities when future epidemics hit.
To read the full report, visit here.
Lindsey Grubbs is a doctoral student in Emory's Department of English and is in the Certificate in Bioethics program offered through the Center for Ethics. Her research interests include 19th- and 20th-century American literature, disability studies, and bioethics.