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

Introducing Ethically Sound: A Podcast Series from the Bioethics Commission

bioethics_twitter-v3-08Since the Bioethics Commission was established via Executive Order by President Obama, the Bioethics Commission has put forth 10 reports on a variety of ethically challenging topics, and has provided recommendations on topics ranging from synthetic biology to neuroscience to whole genome sequencing. As the Bioethics Commission’s tenure comes to a close, we are issuing a new podcast series called Ethically Sound.  Beginning Monday, we will release one podcast per week for ten weeks, beginning with the podcast on the report Safeguarding Children: Pediatric Medical Countermeasure Research.

The podcasts focus on a particularly salient ethical challenge that was addressed in each report, and illustrate how these ethical challenges impact our communities and how the Commission’s work can influence how these challenges are handled. Each of the 10 podcasts will open with an introductory vignette from a speaker closely associated with the topic, who will recount his or her personal or professional experiences and thoughts about that ethical challenge. The podcasts will also feature an interview with one of our Commission members, who will recount how the Commission addressed these ethical issues and what challenges they faced along the way.

All of our podcasts are hosted and narrated by the Commission’s former Communications Director Hillary Wicai Viers. Listeners will be able to access the podcast directly on our website, as well as through the Bioethics Commission’s SoundCloud page and iTunes page. Listeners can also follow the podcast using the hashtag #EthicallySound or following us on twitter @bioethicsgov.

The podcast series is our most recent project aimed at bringing the Commission’s work to a variety of audiences. Other available materials include educational modules that can be adopted for classrooms at all levels, by professionals, and by interested individuals. The Bioethics Commission’s reports can be downloaded for free at www.bioethics.gov/studies, and the Commission’s educational materials can be accessed and downloaded for free at www.bioethics.gov/education. We welcome your feedback and comments at info@bioethics.gov.

The first podcast, featuring Dr. Suzet McKinney, Executive Director of the Illinois Medical District Commission and Commission Member Col. Nelson Michael, will be available on September 12 at www.bioethics.gov.

You can listen to the podcasts from our website, and from our SoundCloud,  YouTube and iTunes pages. Listeners can also follow the podcast using the hashtag #EthicallySound or following us on twitter @bioethicsgov.

 

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Bioethics Commission Closes Meeting with Roundtable Discussion

This afternoon, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) closed its meeting with a roundtable discussion of the impact of bioethics advisory bodies past, present, and future.

Amy Gutmann, Ph.D., Chair of the Bioethics Commission, asked each panelist to identify one important idea or action that encapsulated their thoughts for the day.

Highlights from the discussion include:

Jonathan Montgomery, LL.M., HonFRCPCH, Chair, Nuffield Council on Bioethics, focused on curating topics so as not to reiterate too heavily what past commissions have already discussed.

Eugenijus Gefenas, M.D., Ph.D., Chairperson, Bureau of the Intergovernmental Bioethics Committee, UNESCO, observed that continuity of name and staff of commissions would improve continuity, even across administrations.

Rebecca Dresser, J.D., Daniel Noyes Kirby Professor of Law, Washington University in St Louis, said: “Get out of the bioethics bubble.” She emphasized the experience and knowledge necessary for well-rounded composition of commissions.

Harold T. Shapiro, Ph.D, President Emeritus, Professor of Economics and Public Affairs, Princeton University, said that external review is necessary for quality work product.

Ruth Macklin, Ph.D., Distinguished University Professor Emerita at the Albert Einstein College of Medicine, urged diversity of membership and the importance of including a variety of perspectives.

Robert Cook-Deegan, M.D., Professor, School for the Future of Innovation in Society, Arizona State University, suggested the importance of using relevant expertise to deliberate.

Alexander M. Capron, L.L.B., Scott H. Bice Chair in Healthcare Law, University of Southern California, said “bioethics is a field of inquiry,” and emphasized that individuals should bring their own knowledge and experience from their disciplines to the table.

Thomas H. Murray, Ph.D., President Emeritus, The Hastings Center, said that commissions should “develop robust communication strategies for key audiences,” emphasizing the important role that commissions play in outreach and education.

Members and panelists then engaged in a discussion about what topics will be relevant for a future commission to take up, how they should deliberate, and what their role in society and politics should be. Check out www.bioethics.gov in the next few weeks to watch the archived webcast or read the transcripts.

Thanks for joining us today.

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Presenters’ Additional Reflections on Bioethics Advisory Bodies

Presenters at today’s Bioethics Commission meeting continued their discussion on the impact of bioethics advisory bodies. Future efforts in bioethics and health policy can take into account lessons learned from the experiences of advisory bodies before them.

In the third session of the day, the Bioethics Commission heard from a variety of speakers considering the past, present, and future impact of such groups. Presenters included Ruth Macklin, Distinguished University Professor Emerita in the Department of Epidemiology and Population Health at the Albert Einstein College of Medicine and Harold T. Shapiro, President Emeritus and current Professor of Economics and Public Affairs at Princeton University. In addition, the commission heard from Rebecca Dresser, Daniel Noyes Kirby Professor of Law at Washington University in St Louis, and Eugenijus Gefenas, Chairperson, Bureau of the Intergovernmental Bioethics Committee for the United Nations Educational, Scientific and Cultural Organization (UNESCO).

Ruth Macklin previously presented before the Bioethics Commission during Meeting 6 on the topic of international research ethics. Today, she spoke of her time on the Advisory Committee on Human Radiation Experiments (ACHRE) (1994-1995) under President Clinton. She also spoke about her membership as a staff consultant on NBAC, and the challenges of writing reports while commission members were changing their minds about recommendations. She spoke about maintain intellectual and moral integrity, when writing on behalf of others’ views.

Harold T. Shapiro drew from his time as Chair on the National Bioethics Advisory Commission under President Clinton (1995-2001) and as a member of the Council of Advisors on Science and Technology under President George W. Bush. He noted that we need to be specific about what bioethics is, what topics are important, and what kind of experts are needed to deliberate. He emphasized that whatever structure a bioethics commission takes, the important factor is that the leadership has access to people who can make change.

Rebecca Dresser previously spoke before the Bioethics Commission during Meeting 17 regarding ethical and societal implications of neuroscience, commenting on research protections for participants who might have impaired consent capacity. Today, she considered her time on the President’s Council on Bioethics under President George W. Bush, offering her own insights about what can happen when bioethics is conducted in the national spotlight, especially when the debates have partisan political aspects. She learned that people of different views can engage in civil debate, despite diverse backgrounds and moral commitments. “Deliberation in bioethics should expand to include the voices of as many possible of those now excluded,” she said.

Eugenijus Gefenas reflected on his experience on UNESCO’s Intergovernmental Bioethics Advisory Committee. He observed “Europe is a good example of capacity building for bioethics committees,” because the countries are different in terms of economics and size. He described some challenges that national bioethics advisory bodies face, including the difficulty of directly implementing recommendations and of measuring impact.

Next up: a roundtable discussion with all of our presenters from today’s meeting. Stay tuned!

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Presenters Reflect on National Bioethics Advisory Bodies

In the second session of the day, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) heard from a series of speakers reflecting on the past, present, and future impact of national bioethics advisory bodies. Presenters included Robert Cook-Deegan, Professor at the School for the Future of Innovation in Society at Arizona State University; Alexander M. Capron, Scott H. Bice Chair in Healthcare, Law, Policy and Ethics; Thomas H. Murray, President Emeritus of the Hastings Center; and Jonathan Montgomery, Chair of the Nuffield Council on Bioethics.

Robert Cook-Deegan served on as a member of the Biomedical Ethical Advisory Committee (1987-1990). He observed that the position of the Biomedical Ethical Advisory Committee in Congress as opposed to the executive branch might have contributed to its failure. He noted that an important goal of bioethics commissions should be political impact—for example, the President’s Commission in its Defining Death report influenced state laws. “If a Commission is sanctioned by the US government…there should be something that connects it to the political apparatus, there should be something that you’re doing that matters.”

Alexander M. Capron previously spoke before the Bioethics Commission in 2010 during Meeting 2 regarding the oversight of emerging technologies. Today, he reflected on his time on Chair of the Biomedical Ethics Advisory Committee (1987-1990), and as a member of the National Bioethics Advisory Commission (1995-2001). He emphasized that our Commission has set a good example, showing the ways in which ethical issues move from the research stage to the impact in clinical practice and society. He also noted that topics in public health ethics deserve further examination by bioethics bodies.

Thomas H. Murray, who presented before the Bioethics Commission during Meetings 3 (on emerging technologies), 14 (on integrating ethics throughout the research process), and 21 (in memoriam of John Arras), recalled his time as a member of the National Bioethics Advisory Council (NBAC). He noted the importance of a diversity of perspectives, including ideological and religious variation. He also stated: “Our reports influenced how IRBs, regulators, and researchers think about a variety of issues,” emphasizing the impact that bioethics commissions can have on shaping the debate for generations to come. He complimented our Commission on thoughtful work and excellent use of democratic deliberation to address complex issues.

Jonathan Montgomery previously presented before the Bioethics Commission during Meeting 15 on the Nuffield Council’s efforts to address the social implications of novel advances in neuroscience as the commission deliberated about the ethical and social implications of the President’s BRAIN Initiative prior to releasing its report Gray Matters. At today’s meeting, he discussed his experience on the Nuffield Council of Bioethics in the United Kingdom. He emphasized that Nuffield is not beholden to anyone in terms of the topics they select, which affords them more freedom to explore controversial issues. “It’s crucial that we are courageous,” he said. Respecting the public’s opinion does not mean accepting it without scrutiny.

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Kathleen Sebelius Addresses Bioethics Commission

To start off the meeting, former Secretary of Health and Human Services Kathleen Sebelius addressed, via video presentation, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) and reflected on its tenure during the administration of President Barack Obama.

The Honorable Kathleen Sebelius served as the U.S. Secretary of Health and Human Services under President Barack Obama from 2009 to 2014, and as the Governor of Kansas from 2003 to 2009. She is the President and CEO of Sebelius Resources LLC, which provides strategic advice to companies, investors, and non-profit organizations. Sebelius serves as a Senior Advisor to The Aspen Institute, where she co-chairs the Aspen Health Strategy Group, and as a member on the Board of Directors for companies including Dermira, Grand Rounds, and Humacyte. She earned a Master of Public Administration degree from the University of Kansas and a Bachelor of Arts degree from Trinity Washington University.

During her time as Secretary of Health and Human Services, Secretary Sebelius was instrumental in the establishment of the Presidential Commission on the Study of Bioethical Issues by Executive Order in November 2009; she conducted the swearing-in of the Commission’s Members in 2010. In 2012, she issued the charge that led to the release of the Commission’s fifth report, Safeguarding Children: Pediatric Medical Countermeasure Research.

In her remarks, Former Secretary Sebelius reflected on her unique perspective as a U.S. Presidential Administration official who has charged the Bioethics Commission with a project. The former secretary noted the importance of working on tough issues and working across borders. She observed that Bioethics Commission has served an important national role in crucial issues in science and technology policy.

Sebelius May 2012

Bioethics Commission Chair Amy Gutmann and Vice Chair James Wagner greet then- Secretary of Health and Human Services Kathleen Sebelius at their 9th Meeting in May of 2012 during the Bioethics Commission’s deliberations about pediatric medical countermeasure research.

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Bioethics Commission Meeting 26: Live from Philadelphia, PA

Welcome to Philadelphia, PA for the 26th public meeting of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission). The Bioethics Commission’s meeting is today, August 31, 2016, from 9 a.m. to 3:45 p.m. ET.

At today’s meeting, the Bioethics Commission will continue the discussion it began in Meeting 25, reflecting on the structure, operations, and impact of bioethics advisory committees. The Bioethics Commission welcomes a variety of esteemed speakers who will shed light on different perspectives pertinent to bioethics advisory committee activities, setting the stage for the future of such groups.
For the full agenda of today’s meeting, click here.

You can follow the proceedings of the Bioethics Commission’s meetings here at this blog, and on the live webcast at the Bioethics Commission’s website www.Bioethics.gov. All transcripts and the webcast will be archived and available following the meeting.

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Introducing New Primer Series: Spotting and Responding to Hype

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has released a new series of primers on spotting and responding to science hype in the media. The three primers cover hype related to topics in new technology, public health and neuroscience. The primers introduce hype about scientific topics in the media, and provide users with ways to spot hype and evaluate scientific claims in media outlets. The primers draw on topics covered in three of the Commission’s reports: New Directions: The Ethics of Synthetic Biology and Emerging Technologies, Ethics and Ebola: Public Health Planning and Response, and Gray Matters: Topics at the Intersection of Neuroscience, Ethics, and Society.

The primers are designed to help members of the public spot and respond to hyped claims in the media, which can often distort, exaggerate or misrepresent scientific information. The primers note that hype is generated from numerous sources, including scientists, communication and public relations professionals, and journalists. Each primer provides users with steps to spot hype as well as respond to hype when they counter such claims in news stories and blog posts. The primers also include examples of hyped claims that were found in news outlets.

The Commission has discussed hype in a number of its reports. In New Directions, the Commission recommended that individuals and deliberative forums should use clear language when communicating scientific information and avoid “sensationalist buzzwords” when describing topics in synthetic biology. The Commission also called for a private organization to fact-check claims that discuss advances in synthetic biology. In Ethics and Ebola, the Commission recommended that governments and public health organizations use the best available scientific evidence to inform decisions about using liberty-restricting measures (e.g., quarantines) and avoid bending to public pressure to inappropriately implement such measures. In Gray Matters, the Commission recommended that neuroscientists, attorneys, judges and members of the media avoid using or engaging with hype in relation to using neuroscience in the courtroom, noting that justice is threatened when unfounded neuroscience is used to make decisions in a courtroom.

This set of primers is the most recent addition to our “Conversation Series” collections of primers. Interested individuals can access our other “Conversation Series,” which discusses discussing incidental findings for consumers, research participants and patients. Users can also find informational primers about incidental findings and consent capacity.

Please stay tuned for information about forthcoming educational materials, including a classroom discussion guide and a deliberative scenario about incidental findings based on the Commission’s report Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts.

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

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Exploring Lifelong Bioethics Education

Bioethics Commission member Col. Nelson Michael was recently interviewed by BioEdge, a bioethics news site, about the Commission’s capstone report Bioethics for Every Generation: Deliberation and Education in Health, Science and Technology. Col. Michael discussed lifelong bioethics education, which the Commission supports in its report.

In the interview, Col. Michael said “ethics education is best when it builds on itself over time. Just as we would not expect to develop math skills in an engineer or an accountant by starting with calculus, similarly, we cannot expect to develop ethics literacy unless we build an early foundation starting with the basics.” Col. Michael’s description of ethics as a skill set is supported throughout the Commission’s report, which outlines ways in which ethics can be incorporated at all levels of education.

At the primary school level, educators can help students start to build moral values and positive character traits. This includes developing moral habits such as empathy and honesty, and encouraging students to develop a moral identity, which includes recognition of the importance of moral values to a student’s way of thinking. Though these might seem like difficult topics for young children to comprehend, ethics education initiatives have already shown that children are able to grasp these concepts through age-appropriate learning activities. An ethics program in New South Wales, Australia developed a curriculum to help K-6 students develop skills necessary for ethical decision-making with activities and examples to which children at various stages of development can relate. For example, kindergarten-age students are asked to consider what distinguishes “intentionally” hurting someone from “accidentally” hurting someone, while elementary school students are asked to consider what constitutes fair punishment.

Students at the secondary school level can continue their ethics education as they begin to solidify their own morals and values. In the report, the Commission noted that integrating ethics education at this stage is not without its challenges. As students’ curiosity and understanding of complex and controversial topics develops, educators need to be prepared to handle concerns about ethics promoting particular values. The Commission’s report outlines a variety of models that can be used to teach ethics, and emphasizes that ethics education is about preparing students how to think ethically, rather than what to think. The report also emphasizes that ethical questions and topics can be incorporated into existing courses, such as biology, chemistry, social studies or history courses.

At the post-secondary level, students transition to a college environment, where they are expected to think more critically and independently. At the undergraduate level, there are a number of avenues by which students can expand their ethics education. Ethical topics can be discussed in existing core courses, such as courses in biology, genetics, chemistry, history, philosophy and political science. Students also might have a number of extracurricular options for further exploring bioethics, such as participating in intercollegiate bioethics bowls, through which students can form teams and debate students from other schools.

As students move into graduate and professional programs, their ethical training will become more specialized, and can continue to build upon the ethical skills that students have learned throughout their life. As the report Bioethics for Every Generation notes, ethics training is sometimes required in a number of professional programs, such as nursing and public health.

Col. Michael notes in the BioEdge interview that the idea of lifelong bioethics education is “ambitious,” and it is true that integrating bioethics at all levels of education is not without its challenges. However, all of the Commission’s reports consistently emphasize the importance of incorporating ethics education at all levels of education, because everyone, regardless of their background, will encounter a bioethical challenge at some point in their life. This could involve making a difficult decision about one’s own health or the care and health of a loved one. Developing the skills needed to make difficult ethical decisions does not happen overnight, and like any other skill, requires time and practice.

The Bioethics Commission has developed a series of educational materials that can help develop ethics decision making. All materials can be downloaded for free and used by educators or interested individuals. The Bioethics Commission encourages feedback on its materials at education@bioethics.gov.

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Bioethics really is For Every Generation: Vice Chair publishes editorial on K-12 Education

James Wagner, Vice Chair of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission), recently published a commentary in Education Week. In this piece on the Bioethics Commission’s tenth report, Bioethics for Every Generation, Dr. Wagner notes that early ethics education:

“prepare[s] students for the road ahead. Each of us will face crucial bioethical decisions in our lives—how to make difficult treatment choices when diagnosed with an illness, how best to care for a sick or elderly loved one, or whether to adopt new cutting-edge technologies to detect a genetic disorder or attack a neurological disease. Ethics education can help prepare us to tackle these tough questions.”

The Bioethics Commission’s report delineates how ethics education can be tailored for different educational levels and life stages (see Fig. 4, adapted from Bioethics for Every Generation, p. Wagner K2 Companion Blog Adapted Figure 4 Cleared 7.12.16 69). Dr. Wagner highlighted key ways to integrate bioethics education at the primary and secondary levels. The Bioethics Commission’s recommendations at these levels included:

  • Recommendation 4: Implement Foundational Board-Based Ethics Education at all Levels: Educators at all levels, from preschool to postsecondary and professional schools, should integrate ethics education across the curriculum to prepare students for engaging with morally complex questions in a diverse range of subjects. Ethics education should include attention to both the development of moral character and virtue as well as the cultivation of ethical reasoning and decision-making skills that can be deployed in a bioethics context. Methods of ethics education should be evidence-based and grounded in best practices.
  • Recommendation 6: Support Opportunities for Teacher Training in Bioethics Education: Education policymakers, teacher training programs, and other funders should support development of teacher training in ethics education to prepare teachers of all subjects to facilitate constructive bioethical conversations in their classrooms. Teacher training programs should anticipate existing educational inequities and provide teachers and students with equitable access to ethics education, with an aim of preparing all students for the bioethical questions that might arise during the course of their lives.

As Dr. Wagner concludes, Bioethics for Every Generation ties together educational recommendations the Bioethics Commission has made over its tenure: “When we strengthen ethics education for future scientists and clinicians and for every member the public, we will be better equipped to move forward as individuals and as a nation. Our hope is that every generation can “do better” as we face the dynamic future of that awaits us.”

For more information on the Bioethics Commission’s educational materials that accompany their reports, please explore our education page: http://bioethics.gov/education.

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Introducing the Bioethics Commission’s New Educational Module: Community Engagement in Ethics and Ebola

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has released a new module titled “Community engagement in Ethics and Ebola.” This module is designed to introduce the role and demonstrate the importance of community engagement in public health preparedness. The module builds on the work our most recent report, Bioethics for Every Generation: Deliberation and Education in Health, Science and Technology and the report Ethics and Ebola: Public Health Planning and Response.

The module, part of a series on community engagement, helps students, professionals, and interested individuals learn how community engagement can impact public health efforts, particularly during public health emergencies. The module includes the Bioethics Commission’s recommendations on community engagement related to domestic and international research, the collecting and sharing of biospecimens, and public health communication. The module includes questions and topics for discussion, as well as learning exercises that engage with real-life ethical scenarios.

This module begins by introducing community engagement. Community engagement modules are also available based on our work on synthetic biology, human subjects research protections, and large-scale genomic sequencing. We also have module series on compensation in research, informed consent, privacy, research design, and vulnerable populations, as these topics have been discussed throughout our reports. All modules are available for free download, and can be combined to create a course or incorporated into existing curricula as instructors or curriculum facilitators see fit.

Please stay tuned for information about forthcoming educational materials, including a series of educational materials about science hype in the media involving neuroscience, public health, and biotechnology.

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

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About blog.Bioethics.gov

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.

Learn more about the Presidential Commission for the Study of Bioethical Issues.

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