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

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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Deliberation and Education in Ethics and Ebola

This is the last post in our “Deliberation and Education” series. In each blog post, we have discussed the role that deliberation and education have played in each of the reports issued by the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission). This post will examine deliberation and education in the Bioethics Commission’s brief Ethics and Ebola: Public Health Planning and Response, released in February 2014.

In Ethics and Ebola, the Bioethics Commission turned its attention to the ethical and prudential reasons for U.S. engagement in the global response to the ongoing Ebola epidemic. The Commission recommended policies and practices to support a proactive response to global public health emergencies. In the brief, the Commission considered several lessons that the U.S. response to the epidemic in western Africa has for ethics preparedness and future public health emergencies, related to engagement, infrastructure, communications, and ethics integration.

The Bioethics Commission recognized that democratic deliberation is an important component of public health emergency preparedness because it fosters dialogue with affected communities and promotes flexible decision making. The Commission acknowledged that while the process of democratic deliberation can be challenging during a crisis, when decisions must be made quickly, public engagement is still necessary and possible during a health emergency.

The Bioethics Commission explicitly included education in its third overarching recommendation:

Public officials have a responsibility to support public education and communication regarding the nature and justification of public health responses.

The Bioethics Commission recognized that effective communication can help to educate the public on the nature of the health emergency; provide information on the rationale for policies and programs; and help mitigate the stigma and discrimination associated with many public health emergencies.

Education and democratic deliberation play key roles during both public health emergencies and throughout the work of the Bioethics Commission. These two principles, the cornerstones of the Commission’s work and process, will be the focus of the Commission’s forthcoming capstone report. Ethics and Ebola and all other Commission reports and educational materials are available at Bioethics.gov.

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New Educational Module from the Bioethics Commission on Privacy in Ethics and Ebola Now Available

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has posted a new educational module on its website, Bioethics.gov. This module on privacy focuses on the Bioethics Commission’s work in Ethics and Ebola: Public Health Planning and Response (Ethics and Ebola). This new privacy module on Ethics and Ebola adds to the privacy resources already produced by the Bioethics Commission. Additional materials on privacy include a background module and a module that accompanies the Bioethics Commission’s report Privacy and Progress in Whole Genome Sequencing. Other topics covered by the Bioethics Commission’s educational modules include community engagement, compensation for research-related injury, informed consent, research design, and vulnerable populations.

The Privacy in Ethics and Ebola module briefly introduces the concept of privacy as it relates to the collection, use, and sharing of biospecimens during public health emergencies; sets forth the ethical principles that guide consideration of the privacy issues raised by the collection, use, and sharing of biospecimens during public health emergencies; and describes the privacy protections, including anonymization and de-identification, available for biospecimens that are collected, used, and shared.

The educational modules produced by the Bioethics Commission are based on the contemporary ethical issues 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 http://www.bioethics.gov/education. The Bioethics Commission encourages feedback on its materials at education@bioethics.gov.

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Catching up with the Commission: Fall Conference Season Wrap-up

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) recently ended a very busy fall conference season. Bioethics Commission staff members presented at major bioethics, public health, and specialty conferences across the country in order to promote the work of the Commission.

Former Bioethics Commission staff member Misti Ault Anderson kicked-off conference season at the International Conference on Science in Society, held October 1-2, 2015 in Chicago, Ill. Anderson gave a plenary address on the integration of ethics into science education to an audience of science scholars and professionals from across the world. The following week, Anderson traveled to Greenville, S.C. where she presented “Global Public Health Planning and Response Case Studies as a Teaching Tool,” highlighting the Commission’s new Ebola educational materials at the 17th International Conference on Ethics Across the Curriculum.

On October 16, the Bioethics Commission was back in Chicago for the International Neuroethics Society’s annual meeting. At this meeting, Commission member Dr. Daniel Sulmasy moderated the panel “Implementing Gray Matters: Perspectives on Bioethics Commission Recommendations.” Dr. Sulmasy was joined by William Casebeer of Lockheed Martin Advanced Technology Laboratories, Debra Mathews of Johns Hopkins University, and Hannah Maslen of the University of Oxford for a discussion about the Commission’s report on neuroscience and the implementation of recommendations.

October 22-25, Bioethics Commission staff headed to Houston, Texas for the American Society for Bioethics + Humanities’ (ASBH) 17th Annual Meeting. The Commission’s Ethics and Ebola report was highlighted in the presentation “Ethics and Ebola: Bioethical Approaches to Global Public Health Emergencies.” The Commission’s work on neuroscience was featured in several presentations, including the panel “Considerations of Topics at the Intersection of Neuroscience, Ethics, and Society” as well as the paper “Neuroscience and Public Policy: A Responsible Path Forward.” In addition, Commission staff and Mark Hakkarinen of Georgetown University’s Kennedy Institute of Ethics discussed the communication techniques employed by the Commission in order to disseminate its work in the presentation “Public Bioethics in the New Millennium: Creatively Communicating the Work of the Presidential Bioethics Commission.” The Commission also had an informational booth with hardcopies of its reports available in the ASBH exhibition space.

Quickly following ASBH, the Bioethics Commission was at the 64th Annual Meeting of the American Society for Tropical Medicine & Hygiene in Philadelphia, Pa. On October 27, Associate Director Kata Chillag moderated the conference’s scientific session on Ebola, where she also presented “Ethics and Ebola: Recommendations of the U.S. Presidential Commission for the Study of Bioethical Issues.”

The Bioethics Commission ended October at the 2015 American Public Health Association (APHA) Annual Meeting, held October 31-November 4 in Chicago. Three staff members gave presentations during the roundtable on the ethical conduct of public health practice and research in challenging situations: Kata Chillag presented “Moral Distress among Public Health Professionals: Lessons from the West African Ebola Virus Disease Epidemic for Future Public Health Emergencies”; Karen Meagher presented “Feeling torn, tough choices, and troubled thoughts: The concept of moral distress”; and Executive Director Lisa M. Lee, who also moderated the roundtable, presented “Ethics and Ebola: Recommendations from the Presidential Commission for the Study of Bioethical Issues”. Copies of Commission reports Ethics and Ebola and “Ethically Impossible” were also distributed.

Finally, the Bioethics Commission closed out conference season at the Public Responsibility in Medicine and Research (PRIM&R) 2015 Advancing Ethical Research (AER) Conference, held November 12-15 in Boston, Mass. On November 13, Commission Member Dr. Christine Grady and Commission staff Elizabeth Fenton and Kata Chillag presented “Clinical Research During the Ebola Epidemic: Recommendations from the Bioethics Commission,” highlighting the Commission’s research-related recommendations in its Ethics and Ebola report. The following day, Commission staff Elizabeth Fenton and Nicole Strand presented “A Dialogue with the Bioethics Commission,” providing insight into how a Presidential commission functions.

The Bioethics Commission has had a busy and successful fall season sharing its work with a variety of important stakeholders. Thanks to all who attended! The Commission is already looking forward to an equally successful 2016.

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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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