The blog of the 2009 – 2017 Presidential Commission for the Study of Bioethical Issues

Amnesia and Other Side Effects of Epidemics

If there is one medical condition that commonly occurs at the culmination of many infectious disease epidemics it is “amnesia.”

That was the message from Howard Markel, M.D., Ph.D., the George E. Wantz Distinguished Professor of the History of Medicine at the University of Michigan. He looked to previous fights against infectious diseases over the last 200 years to help the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) process the many lessons to be learned from the recent Ebola epidemic.

Markel said his fear is that precious little will be learned, or that what has been learned will quickly be forgotten.

“The most common final end to a pandemic is what I call profound amnesia,” he said. “SARS? What’s that? We are not yet at ‘Ebola? What’s that?’ But I guarantee you we will be there. And that’s the real problem.”

The Commission is grappling with the U.S. engagement in the global response to the current Ebola epidemic, and Thursday afternoon it sought insights from historical, sociological, and legal perspectives.

For the recent history of the fight against Ebola, the panel turned to Unni Karunakara, Dr.PH, a Senior Fellow at Yale University’s Jackson Institute for Global Affairs. Karunakara was involved in some of the early fights against Ebola during his time with Médecins Sans Frontières (Doctors Without Borders or MSF), where he last served as International President.

Karunakara said the confusion and suspicion that accompanied his early experiences confronting Ebola outbreaks in Africa quickly taught him that there is one thing that will always undermine the effectiveness of the effort.

“Ebola allows no time for mistrust,” he said. “Speed is of absolute importance in an outbreak response.”

Karunakara said MSF has learned that lesson well — for example, it now makes sure Ebola patients under its care can directly be observed from a safe distance by their relatives. That way, he explained, there is quite literally, transparency. But he said mistrust quickly became endemic in the recent Ebola outbreak when early on in the response authorities contemplated quarantines and enacted various restrictions on movement.

“We know that coercive policies are remarkably counter-productive,” Karunakara said. “Checkpoints and roadblocks meant to limit and control movement became a disincentive to seeking care. Fear of being quarantined has made people less forthright about having been in West Africa.”

Dorothy E. Roberts, J.D., the George A. Weiss University Professor of Law & Sociology University of Pennsylvania, believes some of the mistrust and suspicion surrounding the U.S. reaction to the Ebola epidemic stems from the fact that the disease tends to be viewed through the lens of racial stereotypes.

“The two things Americans associated with Ebola the most was Africa and fear,” she said. “The extent to which fear outweighed the scientific evidence of risk was determined by racial concepts and stereotypes and assumptions.”

Roberts said the racial view of disease has led many to think of Ebola as a disease of black people.

“There is a long history in the United States of understanding disease in racial terms and racial differences in terms of disease,” she said.

James W. Wagner, Ph.D., the Commission’s Vice Chair, wryly noted that the panel’s observations painted a bleak picture.

“What we have been hearing from you three is that the life cycle of an epidemic is to begin with denial and neglect and to end with amnesia,” he said. “And the middle is marked with disparities and human rights restrictions and misinformation.”

The Bioethics Commission is expected to deliberate possible recommendations tomorrow morning on the second day of its public meeting.

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This is a space for the members and staff of the 2009 -2017 Presidential Commission for the Study of Bioethical Issues to communicate with the public about the work of the commission and to discuss important issues in bioethics.

As of January 15th, 2017 this blog will no longer be updated but continues to be available as an archive of the work of the 2009-2017 Presidential Commission for the Study of Bioethical Issues

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