community engagement – The blog of the 2009 - 2017 Presidential Commission for the Study of Bioethical Issues Mon, 09 Jan 2017 23:23:29 +0000 en-US hourly 1 Looking Back at the Bioethics Commission’s Blog Mon, 05 Dec 2016 16:00:04 +0000 Throughout its tenure, the Bioethics Commission has maintained an active digital presence to connect with a global audience. A major component of this has been through its blog. This final blog post reflects on the role the blog has played in disseminating the Bioethics Commission’s work.first-blog

Former Bioethics Commission Executive Director Valerie Bonham launched the commission’s blog on November 15, 2010, announcing that the staff would be liveblogging during Meeting Three in Atlanta. From that meeting onward, Bioethics Commission staff continued to blog live from the Bioethics Commission’s meetings, held throughout the country in cities including Washington DC, Philadelphia, Salt Lake City, San Francisco, Chicago, and Boston. Meeting posts highlighted salient points of discussion as they occurred during the public meetings. For example, during Meeting Three, a blog post outlined the members’ deliberations regarding the risks and benefits of synthetic biology. During Meeting Eighteen, which focused on ethical issues in neuroscience, a blog post highlighted some of the discussion about the ethical challenges in neuroscience research. The Bioethics Commission also used blog posts to distill complex topics that arose during meetings. During Meeting Twelve, which focused on pediatric medical countermeasure research, a blog post presented a simplified structure of some of the federal regulations concerning pediatric research.

The commission’s blog also highlighted and explained the impact of the commission’s work. For example, during the commission’s tenure, a notice of proposed rulemaking (NPRM) to revise the Common Rule—the regulations that govern the ethical conduct of federally supported human subjects research—was published in the Federal Register on September 8, 2015. Elements of the commission’s work were included in this notice. In September and October 2015, the Bioethics Commission released a series of blog posts that described some of the relevant inclusions in the NPRM, and explained their significance.

The Bioethics Commission also used the blog to share its outreach activities and initiatives with a broad readership. For example, when Bioethics Commission staff attended the annual meeting of the American Society of Bioethics and Humanities in October 2015, a blog post highlighted the commission’s outreach efforts, and included answers to frequently asked questions that staff members fielded while at the conference. When the Bioethics Commission presented at the White House BRAIN conference, a blog post shared Executive Director Lisa M. Lee’s remarks. On June 8, 2016, Col. Nelson Michael gave an interview with the bioethics news site BioEdge, and the Bioethics Commission staff wrote a two-part blog post on some of the issues Col. Michael raised regarding democratic deliberation and ethics education. Blog posts were also written to describe publications in academic journals by Commission members and staff. A blog post shared a commentary written by Bioethics Commission Vice Ch
air Dr. James Wagner, who wrote about the importance of early ethics education.

During its tenure, the Bioethics Commission produced over 65 educational materials, and used the blog to picture1announce the availability of new educational materials, including user guides, primers, classroom discussion guides, and deliberative scenarios. Blog posts also helped outline how to use the educational materials. Blog posts also highlighted topics including innovations in ethics education, and the importance of civic engagement. The Bioethics Commission also used the blog to announce and promote its podcast series Ethically Sound, a 10-episode series that focuses on some of the ethical issues raised in the commission’s reports.
Readers can access previous blog posts, educational materials, the podcast series Ethically Sound, along with all of the Bioethics Commission’s reports and related materials at On behalf of the Bioethics Commission, we thank our readers for their continued interest in the work of the commission.

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Ethically Sound podcast: Full series now available Wed, 23 Nov 2016 16:00:54 +0000 bioethics_twitter-v3-08Since the Bioethics Commission was established by Executive Order by President Obama, the Bioethics Commission has released 10 reports on a variety of ethically challenging topics, and has provided recommendations on topics ranging from synthetic biology and neuroscience to whole genome sequencing and public health preparedness. Over the last 10 weeks, the Bioethics Commission has released its 10-episode podcast series Ethically Sound, based on the work produced by the Bioethics Commission. Each episode in the series focuses on a particularly salient ethical challenge that was addressed by the Bioethics Commission, and illustrates how these ethical challenges impact our society. All 10 episodes of Ethically Sound are now available on our website.

Each of the 10 podcasts opens with an introductory vignette from a speaker closely associated with the topic, who recounts a personal or professional experience related to the ethical issues addressed in the particular report. Each episode also features an interview with a member of the Bioethics Commission, who describes how the Commission addressed the topic. Ethically Sound is hosted and narrated by the Commission’s former Communications Director Hillary Wicai Viers.

The Bioethics Commission has also released a new educational resource related to the podcasts, “Ethically Sound Discussion Guide: Podcast Series Discussion Questions.” This discussion guide is designed to facilitate classroom or seminar discussion.  The discussion guide, and all of the Bioethics Commission’s educational materials, can be downloaded for free and adapted for all levels of learners.

This podcast series is the Bioethics Commission’s most recent project aimed at bringing the Commission’s work to a variety of audiences. The Ethically Sound series is now available on our website, as well as on our SoundCloud, YouTube and iTunes pages. Listeners can follow the podcast using #EthicallySound or by following us on Twitter @bioethicsgov. The Bioethics Commission’s reports can be downloaded for free at, and the Commission’s educational materials can be accessed and downloaded for free at We welcome comments and feedback at

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Ethically Sound Episode 10: Charting a Path Forward Mon, 21 Nov 2016 16:00:01 +0000 The tenth and final episode of the Bioethics Commission’s podcast series, Ethically Sound, is now available. Today’s episode, “Charting a Path previewscreensnapz001Forward,” focuses on the Bioethics Commission’s two most recent public meetings, during which the Bioethics Commission reflected on the impact of past, present, and future of national bioethics advisory bodies.

Since the 1970s, the U.S. has had a succession of national advisory bodies to provide Congress or the President with expert advice on topics related to bioethics. Other countries also benefit from advisory bodies that provide advice about bioethi
cal issues. During its twenty-fifth and twenty-sixth public meetings, the Bioethics Commission heard
from members of past bioethics advisory bodies, representatives of international bioethics bodies, as well as officials who have been advised by such bodies.

The podcast opens with a narrative from Alex Capron, Professor of Law and Medicine at the University of Southern California. Mr. Capron chaired the Biomedical Ethics Advisory Committee from 1987 to 1990, and served on President William J. Clinton’s National Bioethics Advisory Body from 1996 to 2001. Mr. Capron presented before the commission during Meeting 26, and reflected on his experiences with both of these advisory bodies. In the podcast, Mr. Capron recounts a challenging experience he faced while describing the disciplinary backgrounds of bioethics advisory body staff to policymakers unfamiliar with the interdisciplinary nature of bioethics.

The podcast also includes an interview with Bioethics Commission member Dr. Daniel Sulmasy, Kilbride-Clinton Chair in Medicine and Ethics at the University of Chicago. The interview was conducted by Hillary Wicai Viers, a former Communications Director with the Bioethics Commission staff. Dr. Sulmasy discussed the importance of looking to past commissions, the legacy of the current Bioethics Commission, and the pressing ethical issues that we could face in the future. Regarding the importance of looking to past bioethics commissions, Dr. Sulmasy said “The past is applicable because many of the most basic ethical questions are perennial. We may encounter new problems, but the most fundamental questions about human finitude, the meaning of human progress, the role of balancing relief of suffering versus other ethical principles, questions of cost, and justice are always with us.”

Episode 10, and all of the other Ethically Sound episodes, is now available on our website, as well as on our SoundCloud, YouTube and iTunes pages. Listeners can follow the podcast using #EthicallySound or by following us on Twitter @bioethicsgov. Stay tuned for our upcoming educational resource, a set of discussion questions to accompany the Ethically Sound series that can be used in a classroom or seminar setting. We welcome comments and feedback at

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Introducing New Deliberative Scenario and Teacher Companion from the Bioethics Commission: “Return of Genetic Research Results” Wed, 21 Sep 2016 14:19:57 +0000 The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has released two new educational materials, “Deliberative Scenario: Return of Genetic Research Results” and “Teacher Companion for Deliberative Scenario: Return of Genetic Research Results.” This new deliberative scenario and teacher companion build on the work of two of the Bioethics Commission’s reports, Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts (Anticipate and Communicate) and Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology.

Deliberative Scenario: Return of Genetic Research Results” highlights contemporary ethical questions about incidental and secondary findings that can result from genetic testing.

This scenario, like others the Bioethics Commission has released, presents an outline of ethically challenging situations that can provide students an opportunity to practice deliberation.

The “Teacher Companion for Deliberative Scenario: Return of Genetic Research Results” provides teachers with specific instructions for facilitating deliberations for the scenarios in “Deliberative Scenario: Return of Genetic Research Results.” These new educational materials are designed to facilitate deliberation on bioethical issues that have been addressed by the Bioethics Commission, and provide students and teachers with the means to enhance and enrich interdisciplinary ethics education.

These new educational resources are part of a collection of over 60 educational materials that the Bioethics Commission has developed throughout its tenure to support the integration of bioethics education in many disciplines in traditional and nontraditional educational and professional settings. This collection includes a series of teaching tools for students at various educational levels, including topic-based modules, case studies, deliberative scenarios, videos, webinars, and empirical research resources, that address a variety of ethical issues related to public health emergencies, whole genome sequencing, human subjects research, and more.

All of these resources are available for free download and can be integrated into or adapted for existing science or ethics curricula. All Bioethics Commission educational materials are free and available at The Bioethics Commission encourages feedback on its materials at

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Ethically Sound Episode 2: Ethics and Ebola Mon, 19 Sep 2016 14:00:33 +0000

Since the Bioethics Commission was established through Executive Order in 2009 by President Barack Obama, it has released 10 reports on a variety of ethically challenging topics, including synthetic biology, neuroscience, and whole genome sequencing, among others. The Bioethics Commission is excited to release a new podcast series, Ethically Sound. Each episode features one of the Commission’s reports.  Today’s episode, the second in the series, focuses on the Commission’s report Ethics and Ebola: Public Health Planning and Response, which addresses several ethical challenges, including ethical dimensions of public health preparedness, ethical justification for U.S. engagement in global health response, the use of liberty-restricting public health interventions, and selected research ethics issues, that emerged during the response to the 2014-2016 Ebola epidemic in western Africa.

This podcast focuses on the use of restrictive measures, such as quarantine and travel restrictions. Upon their return from affected regions, some health care workers were subjected to restrictive measures by state governments and local public health agencies. Restrictive meaures are sometimes necessary during an epidemic in order to maintain public safety. However, some of the measures used during the Ebola epidemic were overly restrictive, and were issued by state governments and public health agencies in response to the public fear that accompanied Ebola, rather than on the best available scientific evidence. The Commission addressed the stigma and discrimination that can accompany public health emergencies, which can be exacerbated by the use of restrictive measures, and reviewed the historical use of such measures in response to other epidemics. The Commission recommended that governments and public health agencies use the least restrictive interventions necessary, such that interventions are grounded in the best available scientific evidence, and ensure that both the ethical and evidentiary rationale for these measures is clearly communicated, with particular attention to the needs of those most directly affected.

The podcast opens with Dr. Patricia Henwood, an emergency medicine physician and the co-founder and president of the PURE initiative, which examines the use of point-of-care ultrasounds in regions with limited resources. Dr. Henwood recounts her experience of traveling to Liberia during the Ebola epidemic to provide medical care to over 100 patients before the Commission during the Commission’s 20th public meeting. After her return, Dr. faced unclear guidance about what restrictive measures were necessary. Dr. Henwood decided to limit contact with friends and family members during her 21-day monitoring period so they would not have to undergo unnecessary measures. Of her experiences, Dr. Henwood said she and her colleagues were “often touted as heroes while working in West Africa, [but] felt like pariahs once we were back in the United States.”

The podcast also includes an interview with Commission member Dr. Barbara Atkinson, the Founding Dean of the University of Nevada, Las Vegas School of Medicine. Hillary Wicai Viers, former Communications Director with the Bioethics Commission, conducted this interview. Dr. Atkinson discussed some of the ethical challenges surrounding restrictive measures. Regarding the decisions surrounding the use of restrictive measures, Dr. Atkinson said “the people who were making the decisions at a state level were responding to the fear of the public, [not] the scientific facts. The public was very worried about the lethal nature of this virus, and so they responded in a political way, which was to segregate [health care workers].”

The podcast is available on our website, as well as on our SoundCloud, YouTube and iTunes pages. In addition to this episode, listeners also can access the first episode, “Safeguarding Children.” Listeners can follow the podcast using the hashtag #EthicallySound or following us on twitter @bioethicsgov. Stay tuned for the third episode in our series, “Anticipate and Communicate,” which will be available on September 26, 2016. We welcome comments and feedback at


Introducing the Bioethics Commission’s User Guide for Medical Educators Tue, 05 Jul 2016 09:00:40 +0000 The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has released a new user guide, designed to help medical educators find useful pedagogical materials related to the Bioethics Commission’s work. The user guide builds on the work our most recent report, Bioethics for Every Generation: Deliberation and Education in Health, Science and Technology.

The user guide provides an overview of the Bioethics Commission’s educational materials that can be used by educators in health professions, including medicine, nursing, and allied health. The guide also explains the application and relevance of these materials to students who are pursuing careers in these disciplines. The user guide directs medical educators to the Bioethics Commission’s materials that can be incorporated into the curricula of courses that discuss incidental findings, community engagement, clinical research, genetics, neuroscience, public health, and biotechnology.

This guide is one in a series of user guides that have been designed for use by professionals and educators in a variety of disciplines, including public health, law, and public policy. User guides are also available for high school and science educators. Though the user guides are designed with a particular audience in mind, they, along with all of the Bioethics Commission’s educational materials, can be used by anyone in any area of study.

The Bioethics Commission will be releasing new educational materials in the near future. Please stay tuned for more information about educational materials relating to science hype in the media and a community engagement module associated with the Commission’s report Ethics and Ebola: Public Health Planning and Response.

All Bioethics Commission educational materials are free and available at The Bioethics Commission encourages feedback on its materials at

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Bioethics Commission Meeting 24: Member Discussion of Future Educational Materials Thu, 03 Mar 2016 21:02:06 +0000 Member discussion wrapped up the Bioethics Commission’s twenty-fourth meeting. During this session, members considered future plans for their educational materials. Plans include expanding on the over 50 educational tools currently available on the Bioethics Commission website. Members addressed new topics, audiences, and design of the educational resources.

First, members considered possible future topics, including ethics education and deliberation as modes of engaging with complex, multifaceted, and challenging topics in health and science. Current educational materials align with Bioethics Commission Reports, ranging from their most recent work on Gray Matters: Topics at the Intersection of Neuroscience, Ethics, and Society to their very first report New Directions: The Ethics of Synthetic Biology and Emerging Technologies. Available educational tools also address topics that cut across Bioethics Commission reports including community engagement, compensation for research-related injury, informed consent, privacy, research design, and vulnerable populations. Members considered expanding the topics addressed in Bioethics Commission case studies.

Commission members also considered potential new audiences, from primary and secondary school students to adults encountering these issues as patients, research participants, caregivers, and consumers. Materials already available are designed for researchers, public health professionals, and various educators–including those who teach law, public policy, and science. Current User Guides, for example, serve as quick reference documents to help professionals and educators identify which materials are most relevant to them.

Lastly, the Bioethics Commission members discussed making the most of educational material delivery method. Materials are available online, and members noted how educational tools that are publicly available in an electronic format can reach a wide audience long after the Commission’s tenure. Bioethics Commission educational materials to date come in a variety of audience-specific formats. Members considered which new formats will round-out the Bioethics Commission suite of educational resources for their diverse stakeholders including students, teachers, health and science professionals, and the wider public.

The session concluded, and the Bioethics Commission and staff will now turn to putting these plans in action. Find out about educational materials as they become available via this blog by email subscription, RSS feed, or following the Bioethics Commission on Twitter! E-mail us your feedback on bioethics education at

The Commission is scheduled to meet again on May 3, 2016 in Washington, D.C.

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Bioethics Commission Meeting 24: The Bioethics Commission Educational Materials Thu, 03 Mar 2016 20:03:46 +0000 In the first session of its twenty-fourth meeting, the Bioethics Commission reviewed its current portfolio of educational materials and assessed how it might be expanded to reach new audiences. The Bioethics Commission heard from Elizabeth Pike, J.D., LL.M., a Senior Policy and Research Analyst at the Presidential Commission for the Study of Bioethical Issues; Maneesha Sakhuja, M.H.S., a Research Analyst at the Presidential Commission for the Study of Bioethical Issues; and Steven Kessler, M.S., an Instructor of Biological Sciences at the City College of San Francisco.

Pike described different kinds of educational materials. She explained how primers, for example, are intended to help specific audiences understand and implement the Commission’s recommendations in Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts. She also introduced the topic-based modules, noting how instructors can tailor the addition of cutting-edge topics in health, science, and technology to their classroom to stimulate students’ thinking about their impacts on society. Modules also allow instructors to choose among various activities including discussion questions, problem-based learning, and exercises based on optional additional resources.

Sakhuja continued the discussion by more closely diving into the public health case studies. These case exercises present a detailed description of a case based on real-life public health events, describe relevant analysis from the Bioethics Commission’s deliberations, and prompt engaged discussion. For example, the Communicating During a Public Health Emergency case situates readers in the role of a public information officer in a city health department after learning of a confirmed case of Ebola in a nearby hospital. The case then presents readers with relevant analysis from the Bioethics Commission and asks readers to answer questions about how to proceed with communicating to the public. Sakhuja also unveiled a forthcoming educational material format—deliberative scenarios—slated to be released in Spring 2016. The deliberative scenarios will help high school and college students develop deliberative skills in the classroom by practicing forming a consensus and proposing a course of action by incorporating a variety of perspectives. Each scenario is accompanied with a teacher’s companion to help guide and support the deliberation.

Wrapping up the panel, Kessler informed the Bioethics Commission about his use of the discussion guides in biology classes at the City College of San Francisco. The discussion guides were designed to be appropriate for teachers without expertise in ethics and intended to start conversations about bioethics in a way that was accessible to high school and college students.

The Bioethics Commission will continue the meeting with a member discussion about the educational materials.

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Bioethics in Action: Bringing Bioethics Deliberation into the Classroom Wed, 17 Feb 2016 16:44:00 +0000 This is the first post in our “Bioethics in Action” series of blogs. Check back here for more posts in this series.

As the Bioethics Commission continues its work on deliberation and education, we wanted to highlight an approach situated at the intersection of deliberation and bioethics education. Dr. Rachel Fink, a developmental biologist and professor of biological sciences at Mount Holyoke College, has worked hard and thought creatively about how best to incorporate the ethical and policy dimensions of pressing scientific issues into her basic science courses.

Dr. Fink’s interest in incorporating these ethical and policy dimensions was first piqued when headlines reported the cloning of “Dolly the Sheep.” As Dr. Fink stated, “I ran into class with the headline from that New York Times saying ‘This is one of the most exciting things! Let’s talk about it.’” Over time, Dr. Fink’s approach to incorporating bioethical issues into classroom discussions grew more systematic.

As detailed in an article published in Cell Biology Education, over the course of a semester, Dr. Fink leads a group of seniors in studying the ethical and policy implications of a particularly challenging scientific issue. Past topics have ranged from cloning to embryonic stem cells—in other words, the issues that, as Dr. Fink notes, “bring up conflicts in all thoughtful members of our society.” Dr. Fink has each student in her upper-level course take on the persona of a national or international figure involved in considerations of the particular issue. At the end of the semester, the upper-level students stage a mock deliberation for introductory biology students, presenting a wide range of perspectives on the issue under consideration. In past semesters, upper-level students have taken on the personae of the current Bioethics Commission members and members of the former President’s Council on Bioethics (2001-2009).

A critical advantage of assigning personae to the different students is that it allows for a range of diverse views to be presented. Per Dr. Fink, “Many students have a kind of natural discomfort with having to have their own views put forward as part of the conversation. By taking on the persona of someone else, you can have a thoughtful debate about the pros and cons of something. And yet, nobody’s ego is on the line.” Letting students choose their personae also enables students to explore viewpoints that are distinct from their own: “Some students pick someone who lines up exactly with their views, and others will say, ‘I’m completely liberal, I want to portray the most conservative voice I can find because I’ve never read that stuff. I want to really read their arguments.’”

For the introductory biology students who observe the mock deliberation, the experience is tremendously beneficial. As Dr. Fink observes, “The intro students are used to having adults talk to them and at them and in front of them all the time. By having students as the experts, they really respond to that.” One student summed up her experience observing the mock deliberation as follows: “Normally when you hear debates in this subject, it is either wrong or right to support this, that’s it. But I gathered a really clear understanding of the spaces in between, which made my opinions of the matter more clear.”

In fact, the experience of observing the mock deliberation can be so powerful that many of the students applying to join the upper-level course list their experience observing the mock deliberation as a key factor motivating their decision to enroll. Bringing bioethics deliberation into the classroom is a potentially powerful tool in getting students thinking about and engaged in bioethical issues.

Fink and co
Image: Dr. Fink and Mount Holyoke students at Meeting Twenty-Three of the Bioethics Commission in Arlington, VA (11/17/2015)

Sources: Fink, R.D.. (2002). Cloning, stem cells, and the current national debate: Incorporating ethics into a large introductory biology course. Cell Biology Education, 1(4), 132-144. Interview with Dr. Rachel Fink conducted by E.R. Pike on January 13, 2016.

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The Bioethics Commission and Ethics Integration at All Levels Thu, 19 Feb 2015 17:15:58 +0000 This week, Research Analyst Elizabeth Fenton will present on behalf of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) at the Association for Practical and Professional Ethics Twenty-fourth Annual International Conference. The presentation is part of a four-day conference held by the Association for Practical and Professional Ethics (APPE), an organization founded to promote the advancement and teaching of practical and professional ethics. APPE’s annual conference has a number of different program tracks, including: bioethics, business ethics, environmental ethics, empirical ethics, media and journalism ethics, and research ethics.

Fenton’s presentation is part of the conference’s Bioethics track. Her presentation, “Bioethics Education: Presidential Bioethics Commission and Ethics Integration at all Levels and Across Disciplines,” highlights the Bioethics Commission’s pedagogical materials. Noting the need for improved resources to support ethics education, the Commission has committed to building a foundation of educational materials that can be used across a wide range of academic disciplines in a variety of settings using contemporary ethics issues. The educational materials produced by the Commission range from topic specific modules created to correspond to Commission reports, to primers for physicians, researchers, and patients; the Commission also offers Spanish translations for its materials related to its analysis of the unethical STD research conducted in the 1940s in Guatemala.

Fenton’s presentation will discuss the importance of integrating ethics into educational disciplines such as science, where ethical challenges frequently arise but where researchers might not have the skills or vocabulary needed to recognize or address them. Ethics integration promotes ethical conduct, professional responsibility, and engagement with the broader societal dimensions of research to enable thoughtful decision-making. The presentation will also highlight the need for further research to evaluate the best models for ethics integration.

“Ethics integration is very much a two-way street,” Fenton says. “It is a process in which experts in both ethics and science can become competent and literate in each other’s fields. When scientists develop a vocabulary for expressing ethical concerns, and ethicists have the scientific vocabulary to understand those concerns, both fields benefit.”

All educational materials developed by the Bioethics Commission are available for free on its website at Instructors are encouraged to access, use, and adapt the materials, provide feedback on their utility, and suggest improvements. We encourage comments or suggestions at

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