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

Additional Reflections on National Bioethics Advisory Bodies

The Bioethics Commission continued its discussion on the impact of bioethics advisory bodies, looking to the past to inform future efforts to address social and ethical dimensions of health, science, and technology policy.

In the second panel of the day, the Bioethics Commission heard from a variety of speakers considering the past, present, and future impact of such groups. Presenters included Tom L. Beauchamp, Professor of Philosophy at the Georgetown University Kennedy Institute of Ethics and Ruth Faden, Director of Johns Hopkins Berman Institute of Bioethics. In addition, the commission heard from Manuel Ruiz de Chávez, President of the Mexico National Commission of Bioethics (CONBIOÉTICA) and Patricia King, Professor of Law, Medicine, Ethics, and Public Policy at Georgetown Law.

Beauchamp shared insights gleaned from his time on the staff of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (National Commission) where he contributed to the delineation of foundational principles for research ethics in the Belmont Report. He discussed the enduring impact of the Belmont Report both in the United States and abroad, while acknowledging its limitations and reflecting on what national bioethics bodies should focus on in the future.

Faden spoke of her experience as chair of the President’s Advisory Committee on Human Radiation Experiments (ACHRE). She described ACHRE’s charge and the nature of the issue that it was facing under the Clinton administration. Faden emphasized the power that a presidential commission has, serving as a “public pulpit to make a tremendous difference.”

Ruiz de Chávez talked about the importance of promoting the message of bioethics to the public, and the role that national bodies can serve in fulfilling that mission. He discussed the importance of an interdisciplinary commission and staff to advise executive, legislative, and judicial branches of government.

King reflected on her experience to two U.S. bioethics committees, as a member of the National Commission and ACHRE. She discussed what made the National Commission successful, including the fact that the federal government was required to respond to each of their recommendations, even if they did not take them up, and the fact that they convened at least once a month for over four years. She also discussed some of the features of the commission that she felt could have been improved, including a lack of sufficient disciplinary diversity, and what the members learned from the challenges that they faced during their tenure.

Stay tuned as panelists from the morning’s session return for a roundtable discussion with the Bioethics Commission.

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Reflections on National Bioethics Advisory Bodies

At today’s meeting, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) reflected on its own tenure and that of other bioethics advisory bodies.

In the first panel session of the day, the Bioethics Commission heard from a series of speakers reflecting on the past, present, and future impact of national bioethics advisory bodies. Presenters included Jason Schwartz, Assistant Professor of Health Policy and History of Medicine at Yale University; James Childress, University Professor and John Allen Hollingsworth Professor of Ethics at University of Virginia; Michael Gazzaniga, Director of SAGE Center for the Study of Mind and UC-Santa Barbara; and Nandini Kumar, former Deputy Director of the Indian Council of Medical Research.

Jason Schwartz has written widely on the history of national bioethics advisory bodies, decision making in public policy, and the structure and function of scientific expert advice to government. He addressed the impact of previous national bioethics commissions, highlighting the unique contributions that the current model for acquiring advice on bioethical issues can offer. He noted that bioethics commissions can serve an agenda setting role, identifying pressing issues of the day and bringing them to the fore. For more on this history, including links to previous commissions’ reports, click here.

Childress served as a consultant to the National Bioethics Advisory Commission (NBAC), which outlined ethical principles governing research involving human participants. He was also a member of other bioethics advisory bodies including the Recombinant DNA Advisory Committee and the Biomedical Ethics Advisory Committee. He observed that part of the overall impact of NBAC was to contribute to a public conversation about bioethics. NBAC’s work stimulated public discourse, informed public policy in the United States and abroad, and generated significant media interest in topics in bioethics.

Gazzaniga recalled his time as a member of the President’s Council on Bioethics under President George W. Bush from 2001 to 2009. He noted, “there should always be a bioethics council advising the President,” despite the sometimes controversial nature of the topics that the President’s Council took on. “People change their minds as a result of the public discourse,” he said, emphasizing the important function of diverse bioethics advisory bodies deliberating in public to bring values and facts to light.

Kumar previously collaborated with the Bioethics Commission as a member of the international panel that informed their report Moral Science. She discussed her time as a member of the Indian Council of Medical Research (ICMR) and contemporary bioethical issues arising in India. She stressed the contribution of the ICMR in helping to revise guidelines on many topics in bioethics in India, including informed consent, biobanking, and other important issues.

Following the four presentations, the Bioethics Commission engaged in a lively discussion with the panelists about the topics, structure, and function of Bioethics Commissions and looked towards the future, offering opinions on the best model going forward.

Stay tuned for more of this discussion, continuing in Session 2 at 12:30pm.

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Bioethics Commission Meeting 25: Live from Washington, DC

Welcome to Washington, DC for the 25th public meeting of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission). The Bioethics Commission’s meeting is today, May 3, 2016, from 9 a.m. to 3:15 p.m. ET.

Chair Dr. Amy Gutmann opened up the meeting by summarizing the Bioethics Commission’s forthcoming report focusing on key aspects of their own efforts—on deliberation and education in bioethics. Deliberation is a process that has informed the Bioethics Commission’s practices, including respectfully engaging different viewpoints and striving toward consensus recommendations with transparent and accountable justification. The Bioethics Commission has previously made numerous recommendations to support bioethics education, and developed its own materials to address this need. The new report builds on these efforts, offering new recommendations for advancing bioethics deliberation and education.

At today’s meeting, the Bioethics Commission will begin its discussion of the impact of bioethics advisory bodies past, present, and future. The Bioethics Commission welcomes a variety of esteemed speakers from past U.S and other national bioethics advisory bodies. Panelists will shed light on previous bioethics advisory committees, and how these set the stage for the future of national-level bioethics bodies.

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. All transcripts and webcasts will be archived and available following the meeting.

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Using the Bioethics Commission’s Meeting to Educate About Democratic Deliberation

In the Bioethics Commission’s upcoming work focusing on deliberation and education, the Bioethics Commission describes the principles inherent in successful democratic deliberations. These principles include maintaining mutual respect and providing clear reasons for a position with the goal of arriving at a shared solution.

The Bioethics Commission puts these principles into practice in their own deliberations conducted at public meetings. Since July 2010, the Bioethics Commission has conducted 23 meetings across the country during which they have deliberated about topics and reached agreement on recommendations that are published in their nine reports.

Dr. Rachel Fink, professor of biological sciences at Mount Holyoke College in Massachusetts, brought eight of her students to Washington, DC to observe the Bioethics Commission deliberation in action on November 17, 2015. For many of the students, this provided their first opportunity to observe democratic deliberation firsthand—an opportunity that many of the students found educational.

As one student observed:

Each commissioner had started out in a specific profession and had knowledge in certain subjects, yet they all sat together diplomatically, accepting, critiquing, and refining each other’s ideas and points.

A second student reflected:

I thought the meeting would be a heated debate about an issue of their choice with strong opponents to each side. I expected it would take them awhile, maybe even a few meetings, to agree on a position, and even then the decision wouldn’t be perfect. However, I was incredibly impressed with how well each panelist presented themselves in speech and in logic supporting their individual perspectives, taking into account a number of pros and cons, and how easily they were able to agree with a level head.

Observing democratic deliberation in practice, such as the deliberations carried out by the Bioethics Commission, can serve to educate future deliberators about the merits of the practice and foster appreciation for all that can be achieved through deliberation. In fact, one student noted that the deliberations:

[L]eft an impact on me because I have never had an interest in pursuing politics or policy as I assumed the fields were more cutthroat, more about how the individual can get ahead without thinking about how their decisions affect others. However, after … observing how composed and productive the commission was in a few short hours, I am hoping to someday consider using my advanced degree in science to benefit the community from a political standpoint.

Source: Student reflections provided by Dr. Rachel Fink

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New Educational Module from the Bioethics Commission on Research Design in Ethics and Ebola

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has released a new educational module on research design in the context of a public health emergency. The module integrates material from the Bioethics Commission’s report Ethics and Ebola: Public Health Planning and Response (Ethics and Ebola).

This module serves as a guide for instructors to help students understand key ethical challenges that might arise when conducting clinical research during public health emergencies. The module identifies ethical considerations of various approaches to clinical research during public health emergencies, including randomized controlled trials.

The Research Design in Ethics and Ebola module provides background information on randomized controlled trials and considers the differences between vaccine and treatment trials, the interpretation of what constitutes “best available” supportive care, the necessity of research to be responsive to the host and affected communities, and the importance of designing trials that yield scientifically valid results. Through discussion questions, scenarios, exercises, and illustrative and timely examples, the module guides instructors to help students reflect on ethically relevant concerns that arise in designing research during a public health emergency.

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

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

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Bioethics Commission Meeting 24: Member Discussion of Future Educational Materials

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 education@bioethics.gov.

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

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 Committee Meeting 24: Live Teleconference

Welcome to the twenty-fourth public meeting of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission). The Bioethics Commission is meeting today, March 3, 2016, from 2 p.m. to 4 p.m. EST via teleconference.

At today’s meeting, the Bioethics Commission members will discuss the Commission’s educational materials, present and future. These materials embody the Commission’s commitment to ethics education and are freely accessible at bioethics.gov. The Bioethics Commission will welcome and hear from presenters who have been involved with the development and use of these materials.

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

Today’s teleconference is open to the public by calling 1-888-769-8756 and entering passcode 8934813 when prompted. Additionally, you can follow the highlights here on the blog. Audio recordings and transcripts will be archived and available following the meeting.

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Bioethics in Action: Bringing Bioethics Deliberation into the Classroom

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 History of Bioethics Series – National Bioethics Commissions

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 Bioethics.gov. 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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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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