The blog of the Presidential Commission for the Study of Bioethical Issues

Deliberation and Education in Ethics and Ebola

This is the last post in our “Deliberation and Education” series. In each blog post, we have discussed the role that deliberation and education have played in each of the reports issued by the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission). This post will examine deliberation and education in the Bioethics Commission’s brief Ethics and Ebola: Public Health Planning and Response, released in February 2014.

In Ethics and Ebola, the Bioethics Commission turned its attention to the ethical and prudential reasons for U.S. engagement in the global response to the ongoing Ebola epidemic. The Commission recommended policies and practices to support a proactive response to global public health emergencies. In the brief, the Commission considered several lessons that the U.S. response to the epidemic in western Africa has for ethics preparedness and future public health emergencies, related to engagement, infrastructure, communications, and ethics integration.

The Bioethics Commission recognized that democratic deliberation is an important component of public health emergency preparedness because it fosters dialogue with affected communities and promotes flexible decision making. The Commission acknowledged that while the process of democratic deliberation can be challenging during a crisis, when decisions must be made quickly, public engagement is still necessary and possible during a health emergency.

The Bioethics Commission explicitly included education in its third overarching recommendation:

Public officials have a responsibility to support public education and communication regarding the nature and justification of public health responses.

The Bioethics Commission recognized that effective communication can help to educate the public on the nature of the health emergency; provide information on the rationale for policies and programs; and help mitigate the stigma and discrimination associated with many public health emergencies.

Education and democratic deliberation play key roles during both public health emergencies and throughout the work of the Bioethics Commission. These two principles, the cornerstones of the Commission’s work and process, will be the focus of the Commission’s forthcoming capstone report. Ethics and Ebola and all other Commission reports and educational materials are available at Bioethics.gov.

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New Educational Module from the Bioethics Commission on Privacy in Ethics and Ebola Now Available

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has posted a new educational module on its website, Bioethics.gov. This module on privacy focuses on the Bioethics Commission’s work in Ethics and Ebola: Public Health Planning and Response (Ethics and Ebola). This new privacy module on Ethics and Ebola adds to the privacy resources already produced by the Bioethics Commission. Additional materials on privacy include a background module and a module that accompanies the Bioethics Commission’s report Privacy and Progress in Whole Genome Sequencing. Other topics covered by the Bioethics Commission’s educational modules include community engagement, compensation for research-related injury, informed consent, research design, and vulnerable populations.

The Privacy in Ethics and Ebola module briefly introduces the concept of privacy as it relates to the collection, use, and sharing of biospecimens during public health emergencies; sets forth the ethical principles that guide consideration of the privacy issues raised by the collection, use, and sharing of biospecimens during public health emergencies; and describes the privacy protections, including anonymization and de-identification, available for biospecimens that are collected, used, and shared.

The educational modules produced by the Bioethics Commission are based on the contemporary ethical issues addressed by the Commission, and are designed to provide instructors with foundational information, ethical analysis, discussion questions, problem-based learning scenarios, exercises, and additional resources to support ethics education and the integration of bioethical analysis into coursework across disciplines.

All Bioethics Commission educational materials are free and available at http://www.bioethics.gov/education. The Bioethics Commission encourages feedback on its materials at education@bioethics.gov.

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Catching up with the Commission: Fall Conference Season Wrap-up

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) recently ended a very busy fall conference season. Bioethics Commission staff members presented at major bioethics, public health, and specialty conferences across the country in order to promote the work of the Commission.

Former Bioethics Commission staff member Misti Ault Anderson kicked-off conference season at the International Conference on Science in Society, held October 1-2, 2015 in Chicago, Ill. Anderson gave a plenary address on the integration of ethics into science education to an audience of science scholars and professionals from across the world. The following week, Anderson traveled to Greenville, S.C. where she presented “Global Public Health Planning and Response Case Studies as a Teaching Tool,” highlighting the Commission’s new Ebola educational materials at the 17th International Conference on Ethics Across the Curriculum.

On October 16, the Bioethics Commission was back in Chicago for the International Neuroethics Society’s annual meeting. At this meeting, Commission member Dr. Daniel Sulmasy moderated the panel “Implementing Gray Matters: Perspectives on Bioethics Commission Recommendations.” Dr. Sulmasy was joined by William Casebeer of Lockheed Martin Advanced Technology Laboratories, Debra Mathews of Johns Hopkins University, and Hannah Maslen of the University of Oxford for a discussion about the Commission’s report on neuroscience and the implementation of recommendations.

October 22-25, Bioethics Commission staff headed to Houston, Texas for the American Society for Bioethics + Humanities’ (ASBH) 17th Annual Meeting. The Commission’s Ethics and Ebola report was highlighted in the presentation “Ethics and Ebola: Bioethical Approaches to Global Public Health Emergencies.” The Commission’s work on neuroscience was featured in several presentations, including the panel “Considerations of Topics at the Intersection of Neuroscience, Ethics, and Society” as well as the paper “Neuroscience and Public Policy: A Responsible Path Forward.” In addition, Commission staff and Mark Hakkarinen of Georgetown University’s Kennedy Institute of Ethics discussed the communication techniques employed by the Commission in order to disseminate its work in the presentation “Public Bioethics in the New Millennium: Creatively Communicating the Work of the Presidential Bioethics Commission.” The Commission also had an informational booth with hardcopies of its reports available in the ASBH exhibition space.

Quickly following ASBH, the Bioethics Commission was at the 64th Annual Meeting of the American Society for Tropical Medicine & Hygiene in Philadelphia, Pa. On October 27, Associate Director Kata Chillag moderated the conference’s scientific session on Ebola, where she also presented “Ethics and Ebola: Recommendations of the U.S. Presidential Commission for the Study of Bioethical Issues.”

The Bioethics Commission ended October at the 2015 American Public Health Association (APHA) Annual Meeting, held October 31-November 4 in Chicago. Three staff members gave presentations during the roundtable on the ethical conduct of public health practice and research in challenging situations: Kata Chillag presented “Moral Distress among Public Health Professionals: Lessons from the West African Ebola Virus Disease Epidemic for Future Public Health Emergencies”; Karen Meagher presented “Feeling torn, tough choices, and troubled thoughts: The concept of moral distress”; and Executive Director Lisa M. Lee, who also moderated the roundtable, presented “Ethics and Ebola: Recommendations from the Presidential Commission for the Study of Bioethical Issues”. Copies of Commission reports Ethics and Ebola and “Ethically Impossible” were also distributed.

Finally, the Bioethics Commission closed out conference season at the Public Responsibility in Medicine and Research (PRIM&R) 2015 Advancing Ethical Research (AER) Conference, held November 12-15 in Boston, Mass. On November 13, Commission Member Dr. Christine Grady and Commission staff Elizabeth Fenton and Kata Chillag presented “Clinical Research During the Ebola Epidemic: Recommendations from the Bioethics Commission,” highlighting the Commission’s research-related recommendations in its Ethics and Ebola report. The following day, Commission staff Elizabeth Fenton and Nicole Strand presented “A Dialogue with the Bioethics Commission,” providing insight into how a Presidential commission functions.

The Bioethics Commission has had a busy and successful fall season sharing its work with a variety of important stakeholders. Thanks to all who attended! The Commission is already looking forward to an equally successful 2016.

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Workshop review — Committed Professionals: Handling Obstacles to Ethics in Public Health

This post also appears on Indiana University’s Future of Professional Ethics site.

On Friday, November 13, Dr. Lisa M. Lee, Executive Director for the Presidential Commission for the Study of Bioethical Issues, presented a keynote address for The Future of Professional Ethics workshop series hosted by Indiana University‘s School of Public Health and the Poynter Center for the Study of Ethics and American Institutions.

The workshop event began with a panel discussion featuring Dr. Lee and Indiana University Bloomington faculty members Albert Gay, Jon Macy, and Antonio Williams of the School of Public Health, and Mark Bauman of Medical Sciences Program. This discussion focused on a number of ethical public health topics ranging from the Public Health Service Syphilis Study at Tuskegee project to health communication pertaining to e-cigarettes. The discussions sparked dialogue about the role of ethics in public health from the panelists and the audience of faculty and students alike.

Dr. Lee’s keynote presentation, “Committed Professionals: Handling Obstacles to Ethics in Public Health,” highlighted several key topics, including the evolution of public health ethics over the years, professional ethics in public health, and ethical obstacles and opportunities in public health. Dr. Lee emphasized the importance of being “good” (beneficent) public health professionals; some of their qualities, she noted, include accountability to the public they serve, transparency, and the ability to make ethical decisions when faced with real ethical conflicts. She highlighted some of the work of the Bioethics Commission on the topic of democratic deliberation as a strategy for coming to ethical conclusions when faced with conflicts.

Dr. Lee noted several barriers to public health ethics highlighted by a lack of ethics training in many schools on public health, poorly defined ethics competencies required by many professional accrediting organizations, and an outdated, but persistent, view of ethics as an obstacle to public health work. Further referring to the Bioethics Commission’s work, she noted that ethical considerations, when integrated “early and explicitly” in public health preparedness and practice, facilitate public health activities by anticipating potential concerns and providing decision-making tools to resolve conflicts should they arise.

Dr. Lee closed by suggesting some opportunities and resources for people to get involved in public health ethics, including IUB’s very-own Association for Practical and Professional Ethics (APPE).

This well-attended presentation shows how highly Indiana University students and faculty value professional and public health ethics. In attendance were representatives from a variety of schools, programs, and departments including business, medical sciences, kinesiology, and public health. The audience was engaged throughout and offered many thoughtful questions during the discussion period, including many from students with well-formed thoughts on ethics.

Dr. Lee and the Bioethics Commission staff would like to thank the School of Public Health and the Poynter Center for being such wonderful hosts and for the zeal in which it embraced this very important topic.

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Member Discussion of the Intersection of Deliberation and Education

This is the last session of the Bioethics Commission’s twenty-third meeting. During this session, Members discussed what to recommend at the intersection of deliberation and education. In previous meetings, the Bioethics Commission has heard from experts in education that using deliberation as an educational tool builds the skills that will help students become informed and active participants in their communities. Bioethics education can be an important forum for introducing deliberative methods into diverse educational settings. Commission Members also heard from organizers of and participants in deliberative activities about the important educational function of these activities, which foster a more informed and engaged public. The mutually reinforcing functions of deliberation and ethics education create a virtuous circle, as deliberation facilitates education, and bioethics education builds skills of deliberation.

Members discussed two potential recommendations during this session. First, developments in health, science, and technology, some of which the Bioethics Commission has considered during its tenure, raise significant bioethical questions that need robust and informed public discussion and deliberation. Individuals involved in education and deliberation should use the tools in both of these domains to facilitate greater public engagement with these questions. Ultimately, Members agreed that this recommendation would be an important contribution to the fields of education and to bioethics and policy making.

Second, national bioethics commissions have an important role to play in supporting public bioethics education and contributing to national discourse and deliberations on health, science, and technology policy. Members proposed that future bioethics commissions and other bioethics organizations should continue to explore and advance their educational and democratic role, and should develop and promote accessible educational tools to enable teachers at all levels to integrate deliberation and bioethics education into their classrooms. Members agreed that this would be a valuable send-off to help guide future national bioethics commissions in their work.

The Commission is scheduled to meet again on March 3, 2016 in Atlanta, G.A. For details, go to www.bioethics.gov.

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Member Discussion of Education

Welcome back to our live coverage of the Bioethics Commission’s twenty-third meeting. During this session, Members discussed recommendations for bioethics education in their next report. Like deliberation, bioethics education is a topic that the Bioethics Commission has discussed at length in its public meetings. They have also developed over 50 educational tools related to the topics in their reports. These tools include case studies, teaching modules on key bioethics topics, classroom discussion guides, webinars, and videos, and they are all free and available online on our website at www.bioethics.gov. These materials are designed for teachers and students of bioethics in a variety of contexts, including traditional classroom as well as professional settings.

Members discussed four potential recommendations during this session. First, recognizing the critical role of schools in preparing citizens to participate in their communities and in fostering the values and skills that will help them to address the inevitable bioethical challenges they will face throughout life, they discussed recommending that educators at all levels, from pre-school to professional school, should incorporate into their curricula and courses ethics education tools, such as vivid real-world case studies aimed at the appropriate grade level, that focus on building moral character and ethical reasoning skills. It is upon this foundation that bioethics skill building will be developed. Members agreed that this will be an important recommendation to make. Members emphasized that most citizens as they age will face individual questions about medical decision making that have bioethical dimensions, regardless of their chosen profession.

Second, building on the Bioethics Commission’s recommendations in its past reports, including its first report on synthetic biology and its most recent report on neuroscience and ethics, Members discussed urging graduate and professional education, including in health, science, and technology fields, to include a strong bioethics component to help graduates understand and address the distinct ethical challenges that might arise in the practice of their chosen profession. Members agreed that this would be a valuable recommendation for their report.

Third, Members talked about recommending that education policy makers support professional development of teachers to prepare them to implement ethics and bioethics education and facilitate constructive conversations about complex bioethical questions. Since ethics education can benefit all students, regardless of age or ability, opportunities to participate in ethics education should be provided equitably.

Finally, Members agreed that both the processes and the outcomes of bioethics education should be evaluated to determine how particular programs can contribute to a more informed and ethically literate public. Educators and others involved in bioethics education should contribute to the development of appropriate evaluation tools for assessing how effective bioethics education is in developing related moral reasoning and decision-making skills.

The session concluded, and the Bioethics Commission will now turn to recommendations at the intersection of deliberation and education. Stay tuned!

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Member Discussion of Deliberation

Today, the Bioethics Commission is developing recommendations for its work on deliberation and education. After years of modeling the use of democratic deliberation to arrive at solutions to complex and controversial bioethics and health, science, and technology policy questions, the Bioethics Commission is well-situated to make recommendations in this area.

Members discussed three potential recommendations during this session. First, they discussed strongly urging stakeholders at all levels to use democratic deliberation to inform policy decisions in health, science, and technology that have ethical dimensions. The Bioethics Commission’s own deliberations about medical countermeasure research with children serves as a vivid example of this process. In 2013 during their meetings about pediatric medical countermeasures, Members started with many different ideas about how to move ahead, and through effective deliberation, arrived at a path forward that was not only well-received by the key stakeholders, but was also implemented by major players in the field, including CDC and the Biomedical Advanced Research and Development Authority. During this discussion, Members emphasized that well-designed deliberations can help us formulate better answers to bioethical questions that our society can act upon, by pooling intelligence and insight across a range of backgrounds, expertise, and perspectives. Members agreed that this will be an important recommendation to make. Some Members commented that the report should emphasize the specifics and mechanics of how to conduct democratic deliberation, using vivid examples of deliberative processes at different levels, not just at the federal level.

Second, they discussed recommending that those involved in deliberative activities should use available empirical evidence about methods for deliberation, and ensure that deliberative activities are designed and conducted according to best practices. For example, participants in deliberation should give reasons for their arguments that are accessible to and respectful of fellow deliberators. In addition, the issues chosen for deliberation should raise questions that have not yet been definitively answered. Members discussed some of the important features that deliberative processes should share, including agreeing upon established facts, engaging a diverse range of individuals with different perspectives, and encouraging mutual respect.

Third, they discussed recommending that scholars and others who use deliberative approaches should continue to assess the most effective methods of deliberation as a tool for policy making and public engagement in bioethics. For deliberation to be more widely used and supported as a form of public and political engagement, they felt that we need a better understanding of how different kinds of deliberation work and which work best in which contexts.

We will see you after the break at our next session!

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Implementing Innovations in Ethics Education

The Bioethics Commission began its discussion on ethics education this morning by focusing on how ethics education might be implemented in different educational settings, particularly in schools. The Bioethics Commission heard from David Steiner, Ph.D., the Executive Director of the Johns Hopkins Institute for Education Policy and Professor of Education at Johns Hopkins University, and Laura Bishop, Ph.D., the head of academic programs at the Kennedy Institute of Ethics.

During this morning’s session, Steiner discussed current standardized testing protocols, which often exclude potentially controversial topics that have ethical dimensions. He explained that this exclusion often acts as a disincentive to teachers to introduce such topics into the classroom, preventing the cultivation of deliberative skills in students. This exclusion, Steiner said, “reduce[s] the likelihood that teachers will help students develop the deliberative skills required for democratic participation.” Steiner explained that the kinds of topics that are often excluded from testing and teaching include common issues in bioethics, such as, “death and dying, evolution…family problems…serious illnesses…treatments for serious illnesses…and suffering.”

Bishop went on to discuss the importance of integration bioethics into high school curricula, and efforts to train high school teachers to teach bioethics. She noted the obstacles that need to be overcome to ensure that ethics is integrated into high school curricula, including structural and logistical challenges, parental and teacher concerns about controversial topics, focus on test taking and meeting state standards, and lack of resources, including a lack of clear and fully developed formal curriculum materials, and a shortage of committed funds.

Including bioethics in high school curricula, Bishop explained, can help students learn how to “listen, hear, and understand peers and others who have opinions that are different from their own, and help students be able to articulate what they believe and why.” Bishop also noted that, “the exciting thing is [those learning bioethics in the classroom] also report an increased interest in the subject matter in which they have these bioethics discussions, they are more interested, they retain information, they can work in a facile way with new questions.”

Up next, the Bioethics Commission will discuss potential recommendations for democratic deliberation.

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Bioethics Committee Meeting 23: Live from Arlington, Virginia

Welcome to Arlington, Virginia for the twenty-third public meeting of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission). The Bioethics Commission is meeting today, November 17, 2015, from 9 a.m. to 4 p.m. EST.

At today’s meeting, the Bioethics Commission will continue to discuss the complementary roles of deliberation and education in bioethics. Dialogue will begin on potential recommendations for the Bioethics Commission’s forthcoming capstone report examining the mutually reinforcing inputs to bioethical analyses—democratic deliberation and bioethics education. The Bioethics Commission will welcome expert panelists from the fields of education and ethics who will discuss the implementation of innovations in ethics education.

As an illustration of deliberation and bioethics education in action, the Bioethics Commission welcomes to the meeting today Dr. Rachel Fink’s biology class from Mount Holyoke College in South Hadley, Massachusetts. Dr. Fink’s efforts to engage her students in the ethical dimensions of their science studies by participating in our public meeting today exemplify how integrating bioethics into science education can help to prepare students to think critically and deliberate about science policy questions with significant ethical dimensions.

For the full agenda of today’s meeting, click here.

You can follow the proceedings of today’s meeting here at this blog, and on the link at the Bioethics Commission’s website. All transcripts and webcasts will be archived and available following the meeting.

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Bioethics Commission Attends ASBH 2015

Several staff and members of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) attended the American Society for Bioethics and Humanities (ASBH) annual meeting, held in Houston, Texas October 22-25, 2015. ASBH is a diverse organization of professionals and students engaged in clinical and academic bioethics and the medical humanities. Along with leading multiple sessions on Bioethics Commission work, the Bioethics Commission was pleased to host a booth in the conference exhibition hall. The exhibit featured Bioethics Commission reports, including its most recent reports, Gray Matters: Integrative Approaches for Neuroscience, Ethics, and Society (Gray Matters, Vol. 1), Gray Matters: Topics at the Intersection of Neuroscience, Ethics, and Society (Gray Matters, Vol. 2), and Ethics and Ebola: Public Health Planning and Response. The Bioethics Commission also distributed “Ethically Impossible” STD Research in Guatemala from 1946 to 1948 and Moral Science: Protecting Participants in Human Subjects Research. For others who were unable to attend ASBH, all materials are available for free download at bioethics.gov.

ASBH provided an opportunity to interact with colleagues from across the bioethics community; many attendees reported using our educational resources in their classrooms. The Bioethics Commission welcomes feedback and likes to hear how its materials are being used—if you have used our materials and are interested in sharing your experience, please email education@bioethics.gov!

The Bioethics Commission staff received many great questions at the exhibit. Here are some of the most frequently asked questions:

What is the Bioethics Commission currently working on?
The Bioethics Commission is working on a project on deliberation and ethics education. The Bioethics Commission stands behind strong democratic deliberation and enhancing ethics education. Throughout its tenure, Bioethics Commission members have modeled productive deliberation about a number of controversial topics. The Bioethics Commission has made a dozen recommendations about enhancing public and bioethics education, and the staff has produced a variety of educational materials based on report topics. This project on deliberation and education will be the Bioethics Commission’s capstone report, and will make recommendations about how these areas can mutually reinforce each other.

How does the Bioethics Commission choose the topics that it works on?
Topics come before the Bioethics Commission in two ways. The Executive Office of the President or a member of the President’s cabinet can ask the Bioethics Commission to study a particular topic or question and recommend an ethical way forward. The Bioethics Commission also can choose a topic based on pressing issues in the field.

How does the Bioethics Commission promote public bioethics?
All Bioethics Commission deliberations occur in public during its quarterly meetings. Anyone who is interested may attend these public meetings, or watch the meeting via live webcast at bioethics.gov. These meetings provide a unique opportunity to witness the live deliberations of a national bioethics commission—public bioethics in action. The Bioethics Commission welcomes input from anyone wishing to provide public comment on any issue before it, and is particularly interested in receiving comments and questions during meetings that are responsive to specific sessions. The Bioethics Commission’s next meeting will be held on November 17, 2015 in Arlington, VA. Written comments are accepted in advance of each meeting; please address written comments by email to info@bioethics.gov.

How does the Bioethics Commission disseminate its work?

As a part of its ongoing goal to educate the public and stakeholders about the Bioethics Commission’s recommendations, members and staff participate in many outreach events each year. In addition to discussing the findings of the Commission’s reports, the staff has produced a variety of educational materials based on report topics with the goal of making ethics accessible to a variety of stakeholders in both traditional and nontraditional education contexts.

What happens to the Bioethics Commission after President Obama’s term is over?
Like all federal advisory bodies, the Bioethics Commission must be renewed every two years. The Executive Order under which the Bioethics Commission currently operates has been extended until September 2017. However, if history repeats itself, it is likely that the Bioethics Commission in its current form will complete its work at the close of President Obama’s term in January 2017. At that time, it is also expected—though not guaranteed—that the next president will establish his or her own bioethics commission.

Thanks to all who stopped by our booth this year!

 

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This is a space for the members and staff of the 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.

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