Earlier today the Presidential Commission for the Study of Bioethical Issues released a brief (90 pages, so your mileage may vary), Ethics and Ebola. The report is intended to provide an assessment of the current Ebola outbreak (particularly of the response to cases diagnosed in the U.S.) and recommendations for becoming better prepared for future outbreaks.
The report’s recommendations cover how to prepare for outbreaks, ethical reasons for intervention in outbreaks, guiding principles for deciding to use restrictive public health measures (such as quarantines), and how to conduct research (if warranted) in outrbeak situations. The recommendations are summarized below:
- For ethical reasons and to protect national interests, the U.S. government has a responsibility to engage in preparedness and to participate in coordinated global responses to public health emergencies.
- The United States should strengthen key elements of its domestic and global health emergency response capabilities, including increased funding and collaboration with other international, national, and nongovernmental public health organizations; identifying and empowering a single U.S. health official accountable for all federal public health emergency response activities; and strengthening the deployment capabilities of the U.S. Public Health Service.
- Communication efforts should serve the following interrelated purposes: provide the public with useful, clear, accessible, and accurate information about the response; provide those most directly affected by public health policies and programs with an appreciation of the values reflected in, and reasoning behind, their implementation; and mitigate stigmatization and discrimination associated with many public health emergencies.
Ethical principles should be integrated into timely and agile public health decision making processes employed in response to rapidly unfolding epidemics. Qualified public health ethics expertise should be readily available to identify ethical considerations relevant to public health emergencies and responses in light of real-time available evidence. The single U.S. health official accountable for all federal public health emergency response activities should also be accountable for ethics integration.
Governments and public health organizations should employ the least restrictive means necessary in implementing restrictive public health measures intended to control infectious disease spread. In addition, governments and public health organizations should be prepared to communicate clearly the rationale for such measures and provide ongoing updates to the public about their implementation, with particular attention to the needs of those most directly affected.
Research during the Ebola epidemic should provide all participants with the best supportive care sustainably available in the community where the research is conducted. Trial designs should be methodologically rigorous and capable of generating results that are clearly interpretable, acceptable to the host communities and, to the extent possible, minimize delays to completing the research. Properly designed placebo-controlled trials can meet these conditions, and innovative designs ought to be considered as a means of addressing these research goals. Research teams should actively engage with affected communities while planning research to determine the trial design that best reflects these ethical and scientific requirements.
The U.S. government should ensure that Ebola virus related biospecimens areobtained ethically. The U.S. government should also, in collaboration with partners, facilitate access to the benefits that result from related research to the broadest group of persons possible. This can be achieved by engaging in dialogue with global partners and working collaboratively with local scientists whenever possible to develop effective strategies for ensuring equitable distribution of the benefits of research both in the United States and abroad.
I’ll note that once again the Commission is influenced by a deliberative democratic model, trying to include as many voices as possible in these difficult decisions.