Presidential Commission for the Study of Bioethical Issues – 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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The History of Bioethics Series – National Bioethics Commissions Wed, 27 Jan 2016 16:33:35 +0000 This is the first post in our “History of Bioethics” series in which we will examine some of the seminal events that shaped the landscape of bioethics and its practice in the world today. This first blog will focus on the creation of the national bioethics advisory bodies in the United States and their different iterations throughout the years.

From our History of Bioethics Commissions page…

The current advisory group, the Presidential Commission for the Study of Bioethical Issues, established by a 2009 Executive Order from President Barack Obama, continues the more than 40-year history of bodies established by the President or Congress to provide expert advice on topics related to bioethics. These groups have differed in their composition, methods, and areas of focus, yet they all have shared share a common goal – to promote the careful examination and analysis of ethical considerations that underlie our nation’s activities in science, medicine, and technology.

The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1974-78) is generally viewed as the first national bioethics commission. Established as part of the 1974 National Research Act, the National Commission is best known for the development of the Belmont Report, a document that laid out the ethical principles and guidelines for research involving human subjects. This document has been used as a basis for further federal regulations in the area of human subjects protections.

The Presidential Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1978-83), also established by Congress, produced reports on foregoing life-sustaining treatment and access to health care, among other topics. Its 1981 report Defining Death was the basis of the Uniform Determination of Death Act, a model law that was enacted by most U.S. states.

The Advisory Committee on Human Radiation Experiments (1994-95) was created by President Bill Clinton to investigate human radiation experiments conducted from 1944 -1974 as well as radiation intentionally released into the environment for research purposes. The committee considered the ethical and scientific standards for evaluating these events and provided recommendations aimed at ensuring that similar events could not be repeated.

Since the mid-1990s, each of the past three presidents has established bioethics commissions to explore ethical issues in science, medicine, and technology. The National Bioethics Advisory Commission (1996-2001), created by President Clinton, examined topics including cloning, human stem cell research, and research involving human subjects. President George W. Bush established the President’s Council on Bioethics (2001-2009), which issued reports on stem cell research, human enhancement, and reproductive technologies, among other topics.

The Presidential Commission for the Study of Bioethical Issues was established in November 2009 and is chaired by Dr. Amy Gutmann, President of the University of Pennsylvania and renowned political philosopher and educator. The Bioethics Commission has dealt with topics ranging from neuroscience, to Ebola, to whole genome sequencing, and more. All of the Bioethics Commission’s reports can be viewed and downloaded for free at A major point of emphasis for the current Bioethics Commission is to educate and inform the nation about bioethics. So far, in its tenure, the Bioethics Commission has created and disseminated materials for a variety of audiences in traditional and non-traditional educational settings. To date over fifty education materials have been developed and are disseminated freely through the website.

Stay tuned to this blog for upcoming posts on the “History of Bioethics”!

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Public Bioethics Wed, 02 Sep 2015 16:16:39 +0000 In today’s opening session, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) turned its attention to facilitating public dialogue about bioethics. Democratic deliberation is a guiding principle of the Bioethics Commission. As outlined in its first report, New Directions: The Ethics of Synthetic Biology and Emerging Technologies, the Bioethics Commission believes that public discussion and debate promote outcomes that are inclusive, thoughtfully considered, and respectful of competing views. Learn more about the Bioethics Commission’s deliberative process in the video: “How does the Bioethics Commission work?

The Bioethics Commission heard from Dennis Thompson, Ph.D. of Harvard University; Sir Roland Jackson of ScienceWise; Marion Danis, M.D. of the National Institutes of Health Clinical Center, and Florence Evans, a participant in the “What’s Next California” deliberative polling exercise.

In Democracy and Disagreement, Thompson has argued that democratic deliberation can allow diverse groups separated by class, race, religion, and gender to explore an issue together in ways that allow their different views to stimulate a richer and more extensive discussion.

In this morning’s session, he pointed to the power of deliberative discussions to reach beyond the particular group or body involved, as people who participate become more interested in keeping the dialogue going in their everyday life.

“Deliberations can be propagated,” he said. “There is a study that found that citizens who participated in deliberative action are more likely to talk about the issues and engage with co-workers in ways they didn’t before, and this was an equal opportunity [engagement]. There was not a bias in favor of class and education.”

Jackson, whose organization, ScienceWise, is focused on fostering broader discussions of significant science and technology concerns in the UK, said it’s important to understand that consensus is not necessarily the goal of deliberative processes.

“These are not citizens’ juries or consensus conferences,” he said. “The richness of what comes back from deliberative dialogue is plural and conditional responses. It is then up to the decision maker, the policy maker, to draw on that to make their own conclusions.”

Danis described a specific approach to creating a deliberative process around health insurance policy decisions that uses a game board to facilitate discussions about the complicated array of trade-offs involved. She noted that the experience has demonstrated that “a structured public discussion regarding complex and contested priorities is possible, and the process can improve public understanding and foster meaningful dialogue.”

One challenge she has encountered involves moving the process to the next step—in which the information yielded from deliberative discussions influences policy decisions.

Evans shared her experience as a participant in “What’s Next California,” an innovative effort to draw more ordinary citizens into in-depth consideration and debate of pressing and controversial political issues facing Californians. Evans was impressed with how the deliberative approach prompted a more civil and respectful dialogue on such partisan topics.

“It was an amazing experience,” she said. “We were a bunch of strangers from a lot of different backgrounds…. But everyone was very respectful of each other… There were times when there were emotional responses that were highly charged but they did not dominate.”

After a short break, we will hear from two speakers who will explore fluency in science and ethics.

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Roundtable Discussion: Improving Public Dialogue of Bioethics Wed, 27 May 2015 20:18:49 +0000 The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) closed its discussion of democratic deliberation in bioethics and bioethics education with a roundtable discussion involving Commission members and presenters.

Amy Gutmann, Ph.D., Chair of the Bioethics Commission, kicked off the session by asking the panelists to share their thoughts on what the Bioethics Commission can do to improve the quality of public dialogue and deliberation on bioethics and the quality of bioethics education.

Following are highlights from the discussion:

Margaret Little, Ph.D., director of the Kennedy Institute of Ethics and associate professor in the philosophy department at Georgetown University, suggested that the Bioethics Commission help launch a series of experiments to promote informed deliberation on bioethics, both at universities and in communities. “This is a great model that is used in many places. Right now, there is an energy prize for $5 million to a community that reduces its carbon footprint,” Little noted. “So this is something with incentives and an aspirational mandate.”

“Watching is one thing; doing is another,” said James Fishkin, Ph.D., the Janet M. Peck Professor of International Communication and director of the Center for Deliberative Democracy at Stanford University. He urged the Bioethics Commission to undertake an exemplary project using democratic deliberation to spur public engagement in bioethics. “If you do it right, other commissions can follow in your footsteps,” he added.

F. Daniel Davis, Ph.D., the director of bioethics at the Geisinger Health System and former executive director of the President’s Council on Bioethics under President George W. Bush, said that there’s a need to make ethical knowledge more practical and less theoretical. He cited work he is doing with surgical residents, assessing their emotional intelligence as a way to reduce medical errors. The goal, he said, is to get the residents not only to recognize ethical issues but also to “operationalize that ethical knowledge and do so in a virtuous way.”

Jason Schwartz, Ph.D., M. Bioethics, the Harold T. Shapiro Fellow in Bioethics at the University Center for Human Values, Princeton University, asked the Bioethics Commission to think broadly in terms of the government entities that address bioethics issues. “Call attention to the fact that bioethics may not be the domain of bioethics alone,” he said, noting that many bodies that do not have bioethics in their name or mandate deal with bioethics issues. For example, bioethics is a factor in the how the Food and Drug Administration weighs the risks and benefits of pharmaceuticals, and in how vaccines are prioritized for development. “Ethical dimensions are largely ignored or cast aside or reshaped if they are exclusively technical or scientific questions,” Schwarz said.

Steven Joffe, M.D., M.P.H., the Vice Chair of Medical Ethics, Emanuel and Robert Hart Associate Professor of Medical Ethics and Health Policy and director of Penn Fellowship in Advanced Biomedical Ethics at University of Pennsylvania, emphasized the importance of promoting respectful public dialogues. As a model, he suggested presidential debates in which questions are asked by citizens sitting in a circle. “The citizens equip themselves incredibly well time after time after time. And those sorts of discussions, engaging the public about bioethical issues, I think, would be…incredibly powerful to promote the conversations we want to have.”

Connie Ulrich, Ph.D., R.N., F.A.A.N., an associate professor of bioethics and nursing in the Department of Biobehavioral Health Sciences at the University of Pennsylvania School of Nursing, cited a need for better communication. “Training and communication would absolutely help in bioethics education, so we can help people feel more confident to address the issues that they face.”

The Commission is scheduled to meet again on September 2 in Washington, D.C. For details, go to

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Bioethics Education from Three Viewpoints Wed, 27 May 2015 19:11:17 +0000 This afternoon, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) turned its attention to three approaches for teaching bioethics.

Emphasis on Empirical Methods

Steven Joffe, M.D., M.P.H., the vice chair of Medical Ethics, Emanuel and Robert Hart Associate Professor of Medical Ethics and Health Policy and director of Penn Fellowship in Advanced Biomedical Ethics at University of Pennsylvania, made the case for including empirical scholarship in the education of bioethicists. He identified two broad roles for empiricism in bioethics: to inform ethical analysis and to move from a moral vision to ethical behavior and effective, justifiable policy.

“High-quality, high-impact bioethics requires interdisciplinarity, translation to policy and practice, and grounding in nuanced appreciation of relevant empirical realities,” Joffe said.

Teaching Bioethics through Humanities

Margaret Little, Ph.D., is the director of the Kennedy Institute of Ethics and associate professor in the philosophy department at Georgetown University. Little described how novel approaches to bioethics education, such as the Kennedy Institute’s Conversations in Bioethics series, Massive Open Online Courses (MOOCs), and its Ethics Lab, can help prepare students and the broader public to engage in dialogue and deliberation on topics in bioethics with significant public policy implications.

Each of these approaches has unique advantages. Through the university-wide conversations series, for example, students can gain exposure to experts with both deep knowledge and unique personal experience. Through MOOCs, “anyone with an internet connection can access the world’s experts on a variety of topics,” Little noted. And in the Ethics Lab, students use newly acquired knowledge to design real-world tools and interventions.

Bioethics Education through a Clinical Lens

Connie Ulrich, Ph.D., R.N., F.A.A.N., an associate professor of bioethics and nursing in the Department of Biobehavioral Health Sciences at the University of Pennsylvania School of Nursing, explored the value of nursing to public discourse on ethical issues, the ethical issues that nurses encounter that require bioethics education, and the role of bioethics education in preparing the next generation of nursing professionals.

Ulrich said that nurses face complex and challenging ethical issues in clinical care, partly because of the time they spend directly with patients and their families. Yet only about half of nurses surveyed reported having had ethics education in their basic or advanced professional program, and 23 percent said they’d had no ethics education at all. This lack of preparedness can make nurses feel less confident and less likely to take action when faced with an ethical issue.

“Ethics preparedness can strengthen nurses’ ability to work collaboratively with other health care providers, build confidence to speak about ethics concerns related to patient care, and garner respect as valued members of the caregiving team,” Ulrich said.

Next, the Bioethics Commission will wrap up today’s meeting with a roundtable discussion.

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How to Elevate Bioethics Deliberations to a National Level Wed, 27 May 2015 17:32:16 +0000 The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) continued its discussion about democratic deliberation in bioethics and turned its attention to how bioethics issues are treated in the national dialogue, and the role of national bodies like the Bioethics Commission in fostering democratic deliberation on bioethics. The Bioethics Commission heard from F. Daniel Davis, Ph.D., the director of bioethics at the Geisinger Health System and former executive director of the President’s Council on Bioethics under President George W. Bush, and Jason Schwartz, Ph.D., M. Bioethics, the Harold T. Shapiro Fellow in Bioethics at the University Center for Human Values, Princeton University.

Davis noted that during his three-year tenure as director of a national bioethics advisory body, he never heard the term “democratic deliberation.” But he believes that active citizen participation in bioethics issues is important and should be encouraged. At Geisinger, he said, he has been involved in several efforts to engage patients and elicit their views on research issues that affect them. For example, Geisinger in 2006 established a biobank after conducting a survey to assess community attitudes toward genetic research and approaches to patient consent.

Schwartz spoke to how previous national bioethics bodies in the United States have sought public engagement as part of their deliberative process. There has been, he said, significant variation in how commissions have approached this objective. Some commissions merely provided public notice of their meetings and made their meeting minutes available to the public. In 1994, the National Advisory Committee on Human Radiation Research went much further, actually holding meetings in affected communities and reaching out to interview individuals and families who had participated in radiation research. The National Bioethics Advisory Committee had three public members, a requirement written into its charter.

Both Davis and Schwartz encouraged the Bioethics Commission to consider applying democratic deliberation to its own work as a way to increase public engagement in bioethics issues.

“It has to be more than just doing it in public,” Davis said. He noted that he’s attended commission meetings with 400 people in attendance, as well as others with only 10 attendants. “I worry about what it means to do ethics in public when there are only 10 people in the audience.”

Schwartz agreed. “Trying to systematically understand the concerns, the hopes, the worries of citizens at-large seems a good thing,” he said.

After a short break, we will hear from three speakers who will explore how to bring theory on public engagement with bioethics into practice.

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Lessons from Democratic Deliberations Wed, 27 May 2015 15:22:42 +0000 The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) launched its discussion about democratic deliberation in bioethics this morning by focusing on how to connect theory to practice. The Bioethics Commission heard from James Fishkin, Ph.D., the Janet M. Peck Professor of International Communication and director of the Center for Deliberative Democracy at Stanford University, and Scott Kim, M.D., Ph.D., a senior investigator in the Department of Bioethics at the National Institutes of Health.

Fishkin has worked extensively to apply the theory of democratic deliberation to create informed public policy discussions. During this morning’s session, Fishkin shared his experience conducting 70 democratic deliberation polls in 22 countries, most recently in Tanzania. He explained that he combines a random sampling of the public with specific conditions designed to facilitate free and respectful group deliberation.

In Tanzania, for example, Fishkin worked with the government to recruit 400 citizens to attend a two-day educational meeting, where they were briefed extensively on natural gas policy and participated in group discussions. They were polled both before and after the meeting. Results showed that attending the meeting significantly affected their views.

Fishkin explained that simply giving people information is not sufficient to engage them on a policy issue. Open discussion among people of diverse viewpoints in an environment of mutual respect is essential, he said.

“Democratic deliberation is not populism,” Fishkin said. “Democratic deliberation is an attempt to convene the people under conditions where they really think about the tradeoffs and competing values.”

Kim noted that measuring public values on moral and ethical issues—including bioethical issues—is challenging. He described how he and his colleagues applied democratic deliberation to assess public opinion on surrogate decision-making by family members of people with Alzheimer’s disease.

Similar to what Fishkin found, Kim said that participating in democratic deliberation had a strong effect on people’s views.

“The process is seen as fair and trustworthy by participants,” Kim said. Indeed, he noted that people who participated in democratic deliberation said that they were willing to abide by the group’s decision, even if it did coincide with their personal views.

Up next, the Bioethics Commission will discuss democratic deliberation in bioethics at the national level.

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Rethinking the Global Response to Public Health Emergencies Fri, 06 Feb 2015 17:26:39 +0000 Members of the Presidential Commission on the Study of Bioethical Issues (Bioethics Commission) are considering possible recommendations for future engagements in public health emergencies, including ethical approaches to conducting research in affected countries even in the midst of a crisis.

Yesterday’s deliberations touched on a wide range of issues generated by the ongoing Ebola epidemic in western Africa, from the ethics of using placebos in clinical trials, to the stigmatization of members of western African communities and health care workers who tended to the sick, to the need to improve the response to future outbreaks.

Commission members heard from a wide variety of speakers, including current and former government officials; leading experts in infectious disease, ethics, and global health; and people who belong to and work with communities both in western Africa and the U.S. who have been profoundly affected by the epidemic.

The day closed with a roundtable discussion at which Amy Gutmann, Ph.D., Chair of the Bioethics Commission, posed a simple question: “If there was one thing you think could be improved moving forward in the U.S. response to public health crises like Ebola, what would it be?”

The following are highlights from the panel’s recommendations:

“Throughout this whole outbreak…I always thought: wouldn’t it be nice to have an empowered and independent Surgeon General who could have spoken to the public in a clear, concise way. Somebody who was not micromanaged by the White House or other agencies could have been a game-changer.”
— Peter Hotez, M.D., Ph.D., Dean of the National School of Tropical Medicine at Baylor College of Medicine and President of the Sabin Vaccine Institute

“At the end of the day you can have the best public health system, but you have to build it on the backs of an educated community…As part of the (Ebola) crisis we are facing now, there are about five million kids across three countries who are in danger of missing a whole year of school and that has not been factored into most of the response we have seen. I think that the important intersection between education and health is part of a long-term sustainable solution (to public health challenges).”
— Chernor Bah, Chair of the Youth Advocacy Group at the Global Education First Initiative, and a former child refugee from Sierra Leone who has worked in all three countries affected by the recent Ebola epidemic

“Everyone needs a civics lesson about what states’ rights allow and what the federal government can do. The CDC was lambasted in the early days of the (Ebola case in Dallas) because they did not come in and save the day, without knowing that (legally) they would need to be invited (by Texas authorities) to do so.”
— Howard Markel, M.D., Ph.D., the George E. Wantz Distinguished Professor of the History of Medicine at the University of Michigan

“We need to stress in all messaging to the public the vital importance of structural factors, including inequities in health care in the U.S. and globally, to the spread and prevention of disease. I think that not only will improve people’s health, but it also is the best way to challenge stereotypes and myths about disease.”
— Dorothy E. Roberts, J.D., the George A. Weiss University Professor of Law & Sociology at the University of Pennsylvania

“We need to be better incorporate communications strategies and health literacy into public health strategies. During epidemics, we need to take that as seriously as we do surveillance and make it a key part of the public health response.”
— Seema Yasmin, M.D., a Professor of Public Health at the University of Texas at Dallas, and Staff Writer, Dallas Morning News

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Bioethics Commission Finalizing Work on Neuroscience Fri, 06 Feb 2015 15:15:51 +0000 On July 1, 2013, President Obama requested that the Presidential Commission for the Study of Bioethical Issues (the Bioethics Commission) review the ethical considerations of neuroscience research and its application as part of the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative.

Specifically, the President instructed the Bioethics Commission to “identify proactively a set of core ethical standards – both to guide neuroscience research and to address some of the ethical dilemmas that may be raised by the application of neuroscience research findings.”

Today, during its public meeting in Washington, D.C., the Bioethics Commission worked to wrap up its work on neuroscience and related ethical issues and to finalize its recommendations to the President.

The Bioethics Commission has held (counting today’s gathering) nine public meetings in five cities — Washington, D.C., Salt Lake City, Atlanta, Philadelphia, and San Francisco — that have focused on neuroscience. They have featured extensive discussions with experts from a wide array of disciplines, including neuroimaging, cognitive neuroscience, neurology, computational neurobiology, nanotechnology, psychiatry, ethics, philosophy, computer science, behavioral health, engineering and law. The Commission also has heard detailed public comments from affected communities, including advocates for patients with Alzheimer’s disease, Parkinson’s disease, depression and bipolar disorders.

The Bioethics Commission provided its initial recommendations to President Obama last year in volume one of its Gray Matters report, in which it stressed the importance of integrating ethics early and throughout neuroscience research.

Today’s deliberations will inform the Bioethics Commission’s recommendations for Gray Matters, Volume two, which will focus on three areas: cognitive enhancement and other neural modifications, capacity and the consent process, and neuroscience in the legal system.

Bioethics Commission Chair Amy Gutmann noted that these three areas “illustrate the ethical tensions and societal implications that can arise as neuroscience and technology advance.”

“Our Commission is well situated to clear a path for productive discourse and conduct policy making on these topics,” she added.

The Commission expects Gray Matters, Vol. 2 to be released this spring.

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Back Live for Day 2 of the Bioethics Commission Meeting in D.C. Fri, 06 Feb 2015 14:07:52 +0000 We are back live and blogging in Washington, D.C. for day 2 of the 20th public meeting of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission).

The Bioethics Commission is continuing the discussion initiated at its November meeting in Salt Lake City focusing on issues arising at home and abroad from U.S. engagement in the global response to the current Ebola epidemic. Members today also resume consideration of ethical issues associated with neuroscience research and the application of neuroscience findings, as requested by President Obama.
You can follow the proceedings of the Bioethics Commission’s meeting here at this blog, and on the live webcast. The webcast and transcripts from the meeting will be archived and available following the meeting at

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