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

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

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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 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

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!

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 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

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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Bioethics Deliberation and Education in Gray Matters

In last week’s continuation of our “Deliberation and Education” series, we discussed the role of deliberation and education in the recommendations issued by the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) in its sixth report: Anticipate and Communicate. This week’s post will examine deliberation and education in the Bioethics Commission’s Gray Matters reports.

As part of the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative announced in April 2013, President Obama asked the Bioethics Commission to review the ethical issues associated with the conduct and application of neuroscience research advances. Gray Matters is a two volume Commission report on neuroscience and ethics.

In Gray Matters: Integrative Approaches for Neuroscience, Ethics, and Society (Gray Matters, Vol. 1), released in May 2014, the Bioethics Commission focused on the importance of integrating ethics and neuroscience early and explicitly throughout the research endeavor, and called for funding for ethics. In Gray Matters: Topics at the Intersection of Neuroscience, Ethics, and Society (Gray Matters, Vol. 2), released in March 2015, the Commission focused its analysis on three particularly controversial topics that illustrate the ethical tensions and societal implications of advancing neuroscience and technology.

In Gray Matters, Vol. 1, the Bioethics Commission made four recommendations focused on integrating ethics and neuroscience research. In its third recommendation, the Commission directly recommended education as a part of this integration:

Government agencies and other research funders should initiate and support research that develops innovative models and evaluates existing and new models for integrating ethics and science through education at all levels.

During its deliberations, the Bioethics Commission heard from a number of scientists and educators who emphasized the importance of ensuring that researchers understand the role of ethics in good science. The Commission concluded that ethics and science education should be integrated across the curriculum at all levels, not just in graduate school, in order to create a strong, lasting foundation.

In Gray Matters, Vol. 2, the Bioethics Commission focused its analysis on three topics: cognitive enhancement, consent capacity, and neuroscience and the legal system. The Commission made 14 recommendations to guide the ethical progress of neuroscience research and its applications; the recommendations are divided by topic area and including one concluding recommendation. The Commission included education in its tenth recommendation, under neuroscience and the legal system:

Government bodies and professional organizations, including legal societies and nonprofit organizations, should develop, expand, and promote training resources, primers, and other educational tools that explain the application of neuroscience to the legal system for distribution to members of the public, jurors, judges, attorneys, and others.

In addition, education was also included in the Bioethics Commission’s final, overarching recommendation:

The BRAIN Initiative should establish and fund organized, independent, multidisciplinary efforts to support neuroscience and ethics research and education, including the activities recommended in this report.

Education plays a central role in both volumes of Gray Matters. By providing ethics education and information on the advances of neuroscience, we can ensure that ethical neuroscientific advances continue while avoiding hype and misinformation in a rapidly evolving field.

Both volumes of Gray Matters and all other Bioethics Commission reports are available at

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Bioethics Deliberation and Education in Anticipate and Communicate

Last month, we left off our “Deliberation and Education” series with the blog post “Bioethics Deliberation and Education in Safeguarding Children.” Like previous posts in this series, it examined the role of deliberation and education in the recommendations issued by the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission). This fifth post in the series will examine deliberation and education in the Bioethics Commission’s sixth report: Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts.

Anticipate and Communicate, released in December 2013, expands upon the Bioethics Commission’s previous report, Privacy and Progress in Whole Genome Sequencing. Recognizing that the ethics of reporting incidental findings to individuals was an important and unsettled issue raised in Privacy and Progress, the Commission chose to examine both incidental and secondary findings further in a later report.

The Bioethics Commission made 17 recommendations, divided into overarching and context-specific recommendations for clinicians, researchers, and direct-to-consumer companies. In its fourth overarching recommendation, the Commission directly recommended education as a part of the ethical management of incidental and secondary findings:

Public and private entities should prepare educational materials to inform all stakeholders—including practitioners, institutional review boards, and potential recipients—about the ethical, practical, and legal considerations raised by incidental and secondary findings.

The Bioethics Commission recognized that education is important for ensuring both that the public is able to make informed decisions and that practitioners are aware of their ethical obligations with regard to incidental findings. With this in mind, the Commission created a series of primers for IRB members, practitioners, and recipients to support the practical application of its recommendations. These primers are only the beginning; there still remain numerous opportunities for a variety of groups, organizations, and professional bodies to assist in educating stakeholders about incidental and secondary findings.

Anticipate and Communicate, the Bioethics Commission’s educational materials, and all other Commission reports are available at

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Modernizing Human Subjects Research Protections: Legally Authorized Representatives and Consent Capacity

This is the last installment in a series of blog posts about recent proposed changes to the Common Rule, and how they relate to the work of the Bioethics Commission. The Common Rule currently requires permission from a legally authorized representative (LAR) to enroll participants who lack consent capacity in research. LARs consider and evaluate the merits of research participation on behalf of others—often loved ones—who lack consent capacity.

In Gray Matters: Topics at the Intersection of Neuroscience, Ethics, and Society (Gray Matters, Vol. 2) the Bioethics Commission noted that the Common Rule does not specify who can serve as an LAR, what kinds of decisions an LAR can make, and what processes and procedures are required to establish an LAR. Rather, it indicates that these decisions be made according to “applicable law,” including state law. However, while some states have laws that outline LARs for clinical care, few states have laws that specifically address LARs for research, leaving researchers and IRBs with uncertainty. In Gray Matters, Vol. 2, the Bioethics Commission recommended that “federal regulatory bodies should establish clear requirements to identify who can serve as legally authorized representatives for individuals with impaired consent capacity to support their responsible inclusion in research.”

The recent notice of proposed rulemaking (NRPM), which proposes revisions to the Common Rule, recognizes this regulatory gap that was highlighted by the Bioethics Commission. It notes that a possible ramification of this gap is that in states without clear laws, enrolling participants with impaired consent capacity could be difficult or impossible. The NPRM proposes a revision to the Common Rule that would permit LAR requirements to meet an accepted common practice standard, such as an established state or local hierarchy. This proposed revision mirrors the Bioethics Commission’s recommendation and its suggestion that federal regulatory bodies could recognize previous efforts on this front, such as the priority list of potential LARs developed in 2009 by the Department of Health and Human Services Secretary’s Advisory Committee on Human Research Protections (SACHRP).

If the NPRM proposed revisions are implemented, new research regulations will reflect the Bioethics Commission’s recommendation for clarity in LAR requirements. Clear requirements for LARs facilitate the responsible inclusion of participants with impaired consent capacity in research, which is necessary to fulfill the promise of research that might one day ameliorate neurological disorders and psychiatric conditions.

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Modernizing Human Subjects Research Protections: A Plan for Return of Results

The notice of proposed rulemaking (NPRM), issued in the Federal Register on September 8, 2015, proposes revisions to the Common Rule—federal regulations that govern the protection of human subjects in research—including changes to the criteria for institutional review board (IRB) approval of research. This is the next installment in a blog series about those changes and their relationship to the Bioethics Commission’s work on incidental and secondary findings.

Currently, the Common Rule requires IRBs to find that certain criteria have been met in order to approve research. The NPRM proposes an addition that IRBs should evaluate the appropriateness of a plan for returning individual findings discovered during research, when that plan is submitted as part of the protocol. The proposed rulemaking also addresses the potential challenges of returning individual research findings when it is unclear if the findings are clinically valid or actionable, or when the findings might have psychological or social ramifications.

The Bioethics Commission addressed return of individual research results in its December 2013 report, Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts. The Bioethics Commission recommended that IRBs review and approve plans for the disclosure and management of incidental findings—a recommendation echoed in the proposed changes to the Common Rule. The Bioethics Commission stressed the importance of this plan, recommending both that researchers develop a plan for managing incidental and secondary findings and that, during the informed consent process, researchers clearly communicate their plan to participants.

The NPRM cites to the Bioethics Commission’s report, recognizing the importance of the issue of return of individual research results, and the challenges highlighted by Anticipate and Communicate. The challenge of incidental findings and returning individual results in a research context is a perennial one for IRBs and researchers, and due to more advanced technologies and faster and deeper data analysis, the issue is growing. Anticipate and Communicate addresses these challenges head-on, and the Bioethics Commission is pleased to see that federal research regulations are evolving to address them as well.

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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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