Executive Summary

A February 2015 report from the Presidential Commission for the Study of Bioethical Issues explores ethical issues involving the Ebola epidemic and public health planning and response. Some key recommendations include:

• that ethical principles be integrated into public health decision-making processes in response to rapidly unfolding epidemics;

• that a single U.S. health official be accountable for ethics integration;

• that qualified public health ethics expertise is readily available to identify ethical considerations.

 

The federal government has both a prudential and a moral responsibility to actively participate in coordinated global responses to public health emergencies wherever they arise, according to a February 2015 report, titled Ethics and Ebola: Public Health Planning and Response, from the Presidential Commission for the Study of Bioethical Issues.1

“The Commission feels strongly that in the midst of this very challenging epidemic, while attention is being paid to public health and the ethics of our response, we ought to look at how to plan and prepare for the next one,” says Lisa M. Lee, PhD, MA, MS, the commission’s executive director. The report recommends that a single U.S. health official should be accountable for ethics integration. Other key recommendations include the following:

• That ethical principles be integrated into “timely and agile” public health decision-making processes employed in response to rapidly unfolding epidemics.

Many scientists report that they feel ill-equipped to face ethically challenging situations, notes Lee. “During the Ebola epidemic, one thing that people really struggled with was who should get a limited supply of an effective treatment should one become available,” she says. “That’s something that makes public health officials feel uncomfortable.”

A related issue involved what level of supportive care is ethical; interventions such as dialysis are not sustainable in certain locations. “That decision will have implications for what happens when the epidemic is over,” says Lee. “There are ethical questions about introducing something that you know you can’t sustain.”

Ethics should be involved “early and explicitly,” says Lee — both in public health research and also in practice. “In addition to that, we have to consider the longer-term ethical and societal implications of the work we are doing,” she adds. “If we decide that we ought to treat at an effective — but unsustainable — level, what do we do when we go home and have to take that treatment with us?”

• That qualified public health ethics expertise be readily available to identify ethical considerations relevant to public health emergencies and responses, in light of real-time available evidence.

“In order to do this, we need people whose focus is on identifying ethical considerations and implementing a solution,” says Lee. “They can help teams anticipate ethical concerns, so we don’t find ourselves in situations where something went wrong and we are reacting to it.”

The report recommends that “timely and agile” ethics expertise be available to planning and response personnel. The commission didn’t delineate specifically what the structure should look like — whether it should consist of a consultation service, for example, or an advisory body of several people. “There are many models,” says Lee. “But the efforts should be integrated, with accessible, knowledgeable ethicists who are trained in science.”

High-quality service on public advisory committees and well-argued, evidence-based writing on public health ethics topics are the best markers of public health ethics expertise, says Steven Joffe, MD, MPH, Emanuel and Robert Hart associate professor of medical ethics and health policy and vice chair of the Department of Medical Ethics and Health Policy at the University of Pennsylvania’s Perelman School of Medicine.

“In my view, there’s value to constituting ethics advisory groups for major organizations with a public health function,” he adds.

The Presidential Commission for the Study of Bioethical Issues plays a critical public health advisory role to the federal government, notes Joffe. “In this light, it’s disappointing that in April 2013, the Advisory Committee to the Director of the CDC [Centers for Disease Control and Prevention] voted to disband its Ethics Subcommittee,” he says.2

Bioethics, as a discipline, “hasn’t paid nearly enough attention to public health,” says Joffe. “As important as clinical and research ethics are, public health ethics is just as important — and deserves equal attention from our field.”

Many public health decisions involve a complex weighing of the interests of groups and populations against the interests and rights of individuals. This often occurs in situations of considerable uncertainty. “Recent debates about the freedom of movement of people who had had potential Ebola exposures were one prominent example,” says Joffe.

The commission’s overarching goal is for ethics to be included in the multidisciplinary approach to public health. “Medical practice and science are becoming incredibly multidisciplinary; one of those disciplines has to be ethics,” says Lee. “Ethics should not be an add-on or an obstacle.”

Ethics principles should always be an integral part of the decision-making process at all levels of public health, says Piero Olliaro, MD, PhD, Newton-Abraham visiting professor at United Kingdom’s University of Oxford and a senior research manager at the WHO-based Special Programme for Research and Training in Tropical Diseases. “But while they are highly regulated in certain areas — clinical trials — they are remarkably opaque in others,” he says.

There has been a concerning trend all over the world toward public health decisions being increasingly dictated by efficiency and cost-saving, and less so by basic rights to health, says Olliaro, pointing to decisions not to invest in health systems, surveillance and reporting, and international aid. “There are publicly available damning figures to show how slow the response to Ebola has been, both at the country and international levels,” he says.

If all people have a right to health, then this right “must be part and parcel of decisions which will, one way or another, determine whether one will live a healthy life or not, if illnesses will be prevented, and if ill, whether one will receive adequate treatment,” says Olliaro. “One will have to accept that the separation between ethics and rights will become increasingly tenuous.”

Role of NGOs

George J. Annas, JD, MPH, William Fairfield Warren Distinguished Professor and chair of the Department of Health Law, Bioethics & Human Rights at Boston University, says the commission’s report “voided almost all of the important issues of public health ethics by ignoring human rights,” and thus missed the opportunity to deal with international human rights in a public health crisis, he says.

“Medical ethics is primarily about physicians and patients or research subjects; human rights is about the obligations governments have to their citizens — including, but in no way limited to, protecting their health,” says Annas. In the Ebola crisis, which involved more than one country, issues of the role of the United Nations (UN) and the World Health Organization (WHO) needed to be “much more front and center,” says Annas, as did the question of when, if ever, it is consistent with human rights to use military power to intervene in another country for health reasons.

“Finally, there is virtually nothing about the role (and ethics) of [nongovernmental organizations] in epidemics, although MSF [Medicins Sans Frontieres, also called Doctors Without Borders] did virtually all of the response for the first six months in all three affected countries,” says Annas.

MSF’s philosophy of a “duty to interfere” to help alleviate human suffering cries out for ethical and human rights analysis, says Annas, “especially since the UN has been trying to answer the question of when it might to appropriate for the UN to intervene in a country for humanitarian reasons without that country’s permission.”

References

  1. The Presidential Commission for the Study of Bioethical Issues. Ethics and Ebola: Public Health Planning and Response. February 2015, Washington, DC.
  2. http://www.cdc.gov/od/science/integrity/phethics/EthicsSubcommittee/index.htm.

SOURCES

  • George J. Annas, JD, MPH, William Fairfield Warren Distinguished Professor and Chair, Department of Health Law, Bioethics & Human Rights, Boston University School of Public Health. Phone: (617) 638-4626. Fax: (617) 414-1464. Email: annasgj@bu.edu.
  • Steven Joffe, MD, MPH, Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia. Phone: (215) 898-7136. Fax: (215) 573-3036. Email: joffes@upenn.edu.
  • Lisa M. Lee, PhD, MA, MS, Executive Director, Presidential Commission for the Study of Bioethical Issues. Phone: (202) 233-3960. Fax: (202) 233-3990. Email: Lisa.Lee@bioethics.gov.