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

Looking Back at the Bioethics Commission’s Blog

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 bioethics.gov. On behalf of the Bioethics Commission, we thank our readers for their continued interest in the work of the commission.

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Perspectives in learning: Incorporating discussion materials and activities on ethics into science curriculum.

The Presidential Commission for the Study of Bioethical Issues has released over 60 educational resources that can be used as tools to teach students, researchers, clinicians, and other professionals to recognize and address ethical aspects of their work and understand how deliberation can inform ethical decision-making. These resources draw from the Bioethics Commission’s reports, and while all reports produced to date have been topic-specific, bioethics education and improving bioethics literacy has been a constant thread throughout the Bioethics Commission’s work.

The Commission’s most recent report, Bioethics for Every Generation, outlines a variety of models that can be used to teach ethics, and emphasizes that ethics education is about preparing students how to think ethically, rather than what to think. Bioethics for Every Generation also emphasizes that ethical questions and topics can be incorporated into existing courses, such as biology, chemistry, social studies and history courses, among others.

Frank Strona, the Bioethics Commission’s Senior Communications Analyst and Adjunct Faculty with National University’s Department of Health Sciences recently had an opportunity to sit down and interview Steven Kessler, Instructor of Biology and Microbiology at Santa Rosa Junior College in Petaluma, CA and former Visiting Fellow with the Bioethics Commission, discusses how incorporating bioethics into his science curriculum has affected his students and his work as a science educator.

FRANK STRONA: Tell us about how you have used bioethics to enhance traditional science education.

STEVEN KESSLER:  I incorporate bioethical issues into my traditional science classes in a number of ways.  The most satisfying way is to spend an entire class period delving deeply into one or two (if they are related) issues.  The classroom discussion guides on the Commission’s website have served as a great resource for some questions that can be the basis for these class sessions.  My work as a Visiting Fellow during the spring of 2015 involved working with the commission staff to develop these guides.

When I feel that there is less time to devote to a bioethical issue, I will incorporate the questions and themes into my lectures.  Sometimes, I will then instruct the students to have a short discussion in small groups during class time.  Other times, I simply raise the questions during the lecture and perhaps offer a range of possible responses to these questions.  Even if we do not have a formal discussion, I make sure to give the students an opportunity to ask questions or make comments during the lectures.

Regardless of the format that the content is introduced in, the classroom activities and discussions are the basis for essay questions that the students will work on as a take-home assignment or during in-class examinations (although I always give the questions in advance to ensure the students have adequate opportunity to think deeply and clearly about the issues).  For these questions, I make it clear to the students that I do not grade their position on an issue.  Rather, I mention that I am curious about their position and that I will be grading their explanation of and support for their position. My curiosity is sincere and I want all students to feel safe expressing their points of view. I especially want them to learn how to use reason to support it.

In my basic biology courses, I integrate a wide variety of bioethical issues.  A partial list of these issues includes:

  • The quarantine of health care workers during an Ebola (or other infectious disease) crisis
  • The use of a placebo-controlled trial for potential anti-Ebola drugs during an Ebola crisis
  • Providing anti-HIV drugs to the poor
  • Treating multi-drug resistant tuberculosis in prisons
  • The use of antibiotics in farm animals
  • The genetic modification of foods
  • The genetic modification of humans
  • The patenting of biological organisms, tissues, products, and specimens
  • The history of informed consent (e.g. origins of HeLa cells, compulsory sterilization in the U.S., syphilis studies in Tuskegee and Guatemala)
  • Eugenics programs in the U.S.

FRANK STRONA:  Those are important issues. As you know, the Bioethics Commission has educational resources that address many of these issues (for example, an Ethics and Ebola case study on liberty-restricting public health measures and a Classroom Discussion Guide on ethical issues in neuroscience research). These educational resources were developed to support the integration of bioethics education in traditional and nontraditional educational and professional settings.

KESSLERAll of the topics I’ve mentioned are integrated with the basic science. I find that this is an exciting way to learn the science as it places the material in a broader context.  Some students do not need this broader context to become engaged by the material, but for many students the bioethical issues facilitate their engagement.  Additionally, I find my own passion for the material is greatly enhanced by the placement of the science in a broader societal context. I receive a lot of positive feedback from students and colleagues regarding my own passion and behavior in the classroom.

FRANK STRONA: What challenges do science educators face when incorporating bioethics into science curricula? What tips do you have for overcoming these challenges?

KESSLERThe first challenge to incorporating bioethics into the traditional science curriculum is how to balance all the content in order to meet the course and program learning objectives. Typically, a significant portion of the course material that the instructor plans to cover leaves little time for additional topics.  So a faculty could look at the inclusion of a bioethical discussion as an additional category to the course content. However, in my experience, weaving in the bioethical issues as part of the course provides an opportunity for the student to be introduced to a deeper understanding of the chosen topics and can addresses serve as way to model engaged learning.

Facilitated discussions – online or in-person – are perhaps the best way to use class time to allow the students to gain this deeper understanding. Not only does it offer the student an opportunity to use analytical skills and critical thinking, it also exposes them to other students’ ideas and points of view in a controlled and safe learning environment.  However, when time is the biggest obstacle to addressing bioethical issues, I feel comfortable simply naming some questions, concerns, and controversies during a lecture.  The students can then be provided with additional resources to gain a deeper perspective that tie in to an assigned essays for homework or as exam questions so that they can probe the issues carefully outside of class time.

A second challenge is that basic science instructors do not typically have training in or feel comfortable guiding a discussion about ethical issues.  In my case, I do not always structure the material or course time as a formal philosophical ethics-based discussion, as I am not a professionally trained ethicist either.  Instead, I navigate the topic so it begins with a discussion of the background terminology or information that all participants should share. Then, I ask the students to form small groups and brainstorm the pros and cons of the issue.

I set up several “guidelines” during the small group sessions; I encourage students to avoid assigning any value to the pros and cons at this point. I might suggest to them that they list all the pros and/or cons, even those that seem ridiculous to them at first. I find that an exhaustive list here is helpful in acknowledging as many points of view as possible and allows for a better-reasoned conclusion.  As each group reports back the findings, I do a quick review, after making sure the list seems thorough enough, and depending on how much time we need, I then ask them to start weighing the pros and cons on the list – of course, this naturally occurs during the brainstorming as well – so, that we can move towards a conclusion or recommendation.  I think the approach to a discussion of bioethical issues described here provides an accessible format, and I also expect that many types of instructors could be comfortable with it since this is largely an exercise in reasoning and logic.

FRANK STRONA: What would you say to science educators or others concerned that bioethics might distract from science education?

KESSLERThat is what I consider the third challenge of incorporating bioethics content in the classroom, and that is overcoming the skepticism that exists from other science instructors.  This is something I have experienced.  This skepticism is expressed as criticism of my choice to spend time on bioethics at the expense of an already dense list of material that is required in the course.  (I make sure that I am also addressing all required material as well.)  Another type of criticism I have received is more theoretical.  A colleague has voiced to me a concern that attention to ethical issues muddies the students’ understanding of the science.

Firstly, I consider an avoidance of the ethical issues may convey a set of implied values the instructor may hold or it could leave the students confused.  For instance, if the topic is the genetic engineering of human embryos and the instructor only covers the technical aspects of this (possible future) technology, the students might get the impression that the teacher is promoting the technology, provided that the teacher does not have a cynical tone when presenting the material.  Alternatively, taking even a few moments to acknowledge concerns with the technology provides the students with some assurance that it is acceptable to think more deeply and critically about the technology and rounds out the understanding that there is multiple ways of thinking on the topic.

Secondly, by actively addressing the ethics angle, there is a possibility that the instructor will engage and inspire more students in their overall pursuit of a deep and meaningful education.  I hold that this is the opposite effect of any colleague concerned with distracting the students by addressing ethical issues.

Thirdly, some ethical discussions involve a direct examination of the science. If the discussion revolves around the safety of a technology, then a solid understanding of the science is an important part of assessing the safety. Considering safety then can direct the students to more deeply consider the technical aspects. Additionally, when I bring in the discussion associated with Ethics & Ebola, I am gratified by the attention to the scientific method and clinical trial design that happens as a part of weighing the reliance on placebo-controlled trials.

FRANK STRONA: Incorporating bioethics into science curriculum can be exciting, challenging, and engaging. The Bioethics Commission has developed educational resources for students and professionals including topic-based modules, deliberative scenarioswebinars, and empirical research resources, that address a variety of ethical issues related to public health emergencies, whole genome sequencinghuman subjects research, and more.

As students move into graduate and professional programs, their ethical training becomes more specialized, and can continue to build upon the ethical skills students have learned throughout their life. Developing the skills needed to make difficult ethical decisions does not happen overnight, and like any other skill, requires time and practice.

Incorporating bioethics into science curriculum can enhance a student’s learning experience and encourage further exploration into bioethics through professional or extracurricular activities. All of the Commission’s reports emphasize the importance of incorporating ethics education at all levels of education, because everyone, regardless of their background, will encounter a bioethical challenge at some point in their life.

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Ethically Sound podcast: Full series now available

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 www.bioethics.gov/studies, and the Commission’s educational materials can be accessed and downloaded for free at www.bioethics.gov/education. We welcome comments and feedback at info@bioethics.gov.

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Ethically Sound Episode 10: Charting a Path Forward

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 info@bioethics.gov.

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Introducing “Ethically Sound Discussion Guide: Podcast Series Discussion Questions”

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has released a new educational resource, “Ethically Sound Discussion Guide: Podcast Series Discussion Questions.” safariscreensnapz001The discussion guide is based on the Bioethics Commission’s podcast series Ethically Sound. This 10-episode series is based on the 10 reports the Bioethics Commission produced during its tenure. Each podcast focuses on an ethical challenge the Bioethics Commission addressed in a specific report. Each episode opens with an introductory vignette from a speaker closely associated with the topic, and features an interview with a member of the Bioethics Commission.

The discussion guide includes a set of questions for each podcast designed to stimulate classroom or seminar discussion. The questions challenge students and those in professional training to think critically about why certain topics are important to consider, and how certain ethical challenges might be addressed. The questions are suitable for high school, undergraduate, and graduate-level students, as well as professionals in post-graduate training.

The discussion guide is the most recent addition to a series of educational materials designed to facilitate discussion around the topics addressed by the Bioethics Commission. Educators can access a set of classroom discussion guides to introduce students and professionals to the Bioethics Commission’s reports. Teachers and instructors can use our Guides to Deliberation to introduce students and those in professional training to democratic deliberation, an inclusive method of decision-making used to address open policy questions. Deliberative scenarios can help students and professionals use democratic deliberation to collaboratively address and propose a solution to a contemporary ethical challenge. Educators can use our user guides to find educational materials suitable for a particular field, discipline, or level of education.

All of the Bioethics Commission’s educational materials can be accessed and downloaded for free at www.bioethics.gov/education. The Bioethics Commission welcomes comments and feedback on its materials at info@bioethics.gov.

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Ethically Sound Episode 9: Bioethics for Every Generation

ep-9The ninth episode of the Bioethics Commission’s podcast series, Ethically Sound, is now available. This 10-episode series brings the diverse body of the Commission’s work to a broad audience. Today’s episode, “Bioethics for Every Generation,” focuses on the Commission’s legacy report Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology, which outlines how democratic deliberation and ethics education can be used to address challenging ethical issues in health, science, and technology.

The Bioethics Commission has addressed the importance of democratic deliberation and ethics education in previous reports. In its first report, New Directions: The Ethics of Synthetic Biology and Emerging Technologies, democratic deliberation—a method of collaborative decision making that calls for mutual respect and reason-giving—is one of the five ethical tenets used to assess emerging technologies. In multiple reports, the Bioethics Commission has recommended incorporating ethics education into all stages of training for scientists and health care providers. The report Bioethics for Every Generation describes democratic deliberation and ethics education as mutually reinforcing processes that can help foster a more civic-minded society.

The podcast opens with a narrative from Dr. Lisa M. Lee, Executive Director of the Bioethics Commission. Dr. Lee recounts a challenging experience early in her public health career where she was asked to justify a particular policy. Regarding the importance of ethics in health and science, Dr. Lee said “Science and technology provide us with great tools for improving our experience as human beings, and it is up to us to consider how we ought to use these tools. It is these two parts—the can that science offers and the should that ethics offers—that are critical elements of the decisions we make in health and science.”

The podcast then includes an interview with Dr. Amy Gutmann, President of the University of Pennsylvania and Chair of the Bioethics Commission. The interview is conducted by Hillary Wicai Viers, a former Communications Director with the Bioethics Commission staff. Dr. Gutmann discussed how the Bioethics Commission’s commitment to democratic deliberation allowed it to address ethically challenging topics, and emphasized the importance of ethics education. Regarding the importance of ethics education, Dr. Gutmann said “Ethics education does not teach students what to think, which many parents and educators might worry about. Rather, ethics education helps students learn how to think, and helps students approach ethically challenging topics in a thoughtful and reflective way.”

Episode 9 is now available on our website, as well as on our SoundCloud, YouTube and iTunes pages. In addition to this episode, listeners can access the first eight episodes of Ethically Sound. Listeners can follow the podcast using #EthicallySound or by following us on Twitter @bioethicsgov. Stay tuned for the tenth and final episode in our series, “Charting a Path Forward,” which will be available on November 21, 2016. We welcome comments and feedback at info@bioethics.gov.

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Introducing New Deliberative Scenario and Facilitator Guide from the Bioethics Commission: “MMR Vaccination in a Local Immigrant Community”

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has released two new educational materials, Deliberative Scenario: MMR Vaccination in a Local Immigrant Community and Facilitator Guide for Deliberative Scenario: MMR Vaccination in a Local Immigrant Community. This new deliberative scenario and facilitator guide build on the work of two of the Bioethics Commission’s reports, Ethics and Ebola: Public Health Planning and Response (Ethics and Ebola) and Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology.

This deliberative scenario and facilitator guide draw from contemporary ethical questions and are designed to provide public health professionals with the means to integrate bioethics into public health practice. As outlined in Bioethics for Every Generation, democratic deliberation is a method of decision making that can help groups to identify reasonable options for action when faced with questions or complex topics without a clear consensus about the way forward.

Deliberative Scenario: MMR Vaccination in a Local Immigrant Community highlights contemporary ethical questions about the administration of measles, mumps, and rubella (MMR) vaccinations in immigrant communities, including challenges that might arise when MMR vaccination requirements are linked to access to community resources. This deliberative scenario presents an outline of ethically challenging situations that can be incorporated into deliberation process, providing public health professionals with the opportunity to practice the decision-making method.

The Facilitator Guide for Deliberative Scenario: MMR Vaccination in a Local Immigrant Community includes specific instructions for facilitating deliberations for the situations outlined in this deliberative scenario. This facilitator guide provides public health professionals with specific instructions for facilitating deliberations about the potential social, economic, and cultural effects of vaccination policies on an immigrant community. This guide also includes additional reading based on the roles played in the deliberation.

This new deliberative scenario and facilitator guide introduce public health professionals and public health ethics committees to the process of democratic deliberation. It highlights the benefits of democratic deliberation in developing and implementing public health policies and programs.

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 and professionals 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, ethics, or clinical curricula. 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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Ethically Sound Episode 8: Ethically Impossible

Ethically Impossible,” the eighth episode of the Bioethics Commission’s podcast series Ethically Sound, is now available. Ethically Sound is based bioethics_twitter-v3-08on the 10 reports that the Bioethics Commission has produced during its tenure. The Bioethics Commission, established in 2009 by Executive Order, has addressed a wide variety of ethical challenges ranging from synthetic biology to neuroscience. This episode is based on the Bioethics Commission’s second report Ethically Impossible: STD Research in Guatemala from 1946-1948.

In what is now recognized as an infamous episode in the history of research ethics, the U.S. Public Health Service (PHS) conducted unethical sexually transmitted disease (STD) experiments in Guatemala from 1946 through 1948. The Guatemala STD experiments were carried out with ongoing oversight by PHS and with the approval and engagement of Guatemalan government officials. The research involved intentionally exposing and infecting several vulnerable Guatemalan research subject populations—prisoners, soldiers, and psychiatric patients—to disease, without their consent. When these studies were revealed in 2010, President Barack Obama extended an apology to the President and people of Guatemala. President Obama charged the Bioethics Commission to conduct an ethical analysis of the research that took place, and to review current federal regulations to protect research participants. The Bioethics Commission conducted a thorough fact-finding investigation, reviewed more than 125,000 pages of documentation related to these studies, and traveled to Guatemala to meet with Guatemala’s own investigation committee. The Bioethics Commission’s report presents an unvarnished ethical analysis of the research studies that occurred, and concludes that these studies involved “unconscionable basic violations of ethics.” The Bioethics Commission’s third report Moral Science: Protecting Participants in Human Subjects Research, addresses the second part of the president’s charge. The Bioethics Commission found that participants in federally-funded research studies were generally protected under current regulations, and recommended 14 changes to current practices to better protect research participants.

The podcast opens with a narrative from Dr. Paul Lombardo, Bobby Lee Cook Professor of Law at Georgia State University. Dr. Lombardo serves as a senior advisor to the Bioethics Commission, and traveled to Guatemala to help conduct this investigation. While recounting this experience, Dr. Lombardo said, “I returned to the United States with a more complete understanding of the meaning of the stories we tell about research ethics, not merely as a parochial academic concern, but within a larger historical frame where ill-treatment of research participants implicate the human rights of all people.”

The podcast also includes an interview with Commission member Dr. Anita Allen, the Henry R. Silverman Professor of Law and Professor of Philosophy at the University of Pennsylvania. Hillary Wicai Viers, former Communications Director with the Bioethics Commission staff, conducted the interview. Dr. Allen discussed why the Bioethics Commission conducted a fact-finding investigation, what the investigation entailed, and whether such morally reprehensible research could happen again. Dr. Allen said, “Going deeper into the history…was an important way for us to make sure that we [had] a complete historical picture of what had occurred, and also to increase our chances for understanding what we need to avoid, by way of research practices, moving forward.”

Episode 8 is now available on our website, as well as on our SoundCloud, YouTube and iTunes pages. In addition to this episode, listeners can access the first seven episodes of Ethically Sound. Listeners can follow the podcast using #EthicallySound or by following us on Twitter @bioethicsgov. Stay tuned for the ninth episode in our series, “Bioethics for Every Generation,” which will be available on November 7, 2016. We welcome comments and feedback at info@bioethics.gov.

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Introducing New Deliberative Scenario and Facilitator Guide from the Bioethics Commission: “Seasonal Influenza Vaccination Policy for a Local Public Health Department”

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has released two new educational materials, Deliberative Scenario: Seasonal Influenza Vaccination Policy for a Local Public Health Department and Facilitator Guide for Deliberative Scenario: Seasonal Influenza Vaccination Policy for a Local Public Health Department. This new deliberative scenario and facilitator guide build on the work of two of the Bioethics Commission’s reports, Ethics and Ebola: Public Health Planning and Response (Ethics and Ebola) and Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology.

This deliberative scenario and facilitator guide draw from contemporary ethical questions, and are designed to provide public health professionals with the tools to integrate bioethics into public health practice. It highlights contemporary ethical questions about policies related to the administration of seasonal influenza vaccinations for employees in local public health departments, and whether or not employees should be required to receive vaccines annually.

This deliberative scenario presents an outline of ethically challenging situations that can be incorporated into deliberation process, and provides an opportunity to practice the method of deliberation decision-making. The Facilitator Guide for Deliberative Scenario: Seasonal Influenza Vaccination Policy for a Local Public Health Department includes specific instructions for facilitating deliberations for the situations outlined in this deliberative scenario.

As outlined in Bioethics for Every Generation, democratic deliberation is a method of decision making that can help groups to identify reasonable options for action when faced with questions or complex topics without a clear consensus about the way forward. This facilitator guide provides public health professionals with specific instructions for facilitating deliberations about a challenging decision and the potential impacts of policy changes on various stakeholders. The guide also includes additional reading based on the roles played in the deliberation.

This new deliberative scenario and facilitator guide introduce public health professionals and public health ethics committees to the process of democratic deliberation, as well as to highlight the benefits that democratic deliberation can have in policymaking or the implementation of public health programs.

These new educational resources are a 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 and professionals 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 or new curricula. 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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Ethically Sound Episode 7: Moral Science

ethically_sound_moral-science-7-08Moral Science,” the seventh episode of the Bioethics Commission’s podcast series Ethically Sound, is now available. Ethically Sound is based on the 10 reports that the Bioethics Commission has produced during its tenure. Established in 2009 by Executive Order, the Bioethics Commission has addressed a variety of ethical challenges ranging from whole genome sequencing to public health planning and response. This episode is based on the Bioethics Commission’s third report Moral Science: Protecting Participants in Human Subjects Research.

In what is now recognized as an infamous episode in the history of research ethics, the U.S. Public Health Service (PHS) conducted unethical sexually transmitted disease (STD) experiments in Guatemala from 1946 through 1948. The Guatemala STD experiments were carried out with ongoing oversight by PHS and with the approval and engagement of Guatemalan government officials. They involved intentionally exposing and infecting 1,308 person from vulnerable Guatemalan populations—prisoners, soldiers, sex workers, and psychiatric patients—to disease, without their consent. When these studies were revealed in 2010, President Barack Obama extended an apology to the President and people of Guatemala, and charged the Bioethics Commission to conduct an ethical analysis of the research that took place, and to review current federal regulations to protect research participants. The Bioethics Commission addressed the first part of this charge in its report Ethically Impossible: STD Research in Guatemala from 1946-1948. Moral Science addressed the second part of this charge. The commission found that the kinds of unethical conduct that occurred during the studies conducted in Guatemala from 1946-1948 could not occur under today’s federal protections for research participants. Federal protections generally appear to protect people from avoidable harm or unethical treatment in research conducted or supported by the federal government. However, the commission also found that there is room for improvement in how federally-funded research studies involving human subjects are conducted. In Moral Science, the Bioethics Commission presented 14 recommendations regarding various aspects of protecting human subjects in federally funded research.

The podcast opens with a narrative from Dr. Jerry Menikoff, the Director of the Office for Human Research Protections (OHRP). Dr. Menikoff presented before the Bioethics Commission during its fifth public meeting, where he discussed the role of OHRP in protecting research participants. In this episode Dr. Menikoff shared how the protection of research participants became a central focus in his career, and recounted an eye-opening experience he had while serving on an institutional review board. Following the recollection, Dr. Menikoff said “Since then, making sure that people who are thinking about participating in clinical trials are given the information they need to make fully informed decisions has been an important part of my life’s work.”

The podcast also includes an interview with Bioethics Commission member Dr. Nita Farahany, Director of Science and Society at the Institute for Genome Sciences and Policy at Duke University. Hillary Wicai Viers, former Communications Director with the Bioethics Commission staff, conducted the interview. Dr. Farahany discussed the importance of ethics education for researchers, and how new technologies will shape protections for research participants. Regarding new technologies, Dr. Farahany said, “It’s essential for that kind of research to continue to afford the same kind of protection to human subjects.”

Episode 7 is now available on our website, as well as on our SoundCloud, YouTube and iTunes pages. In addition to this episode, listeners can access the first six episodes of Ethically Sound. Listeners can follow the podcast using #EthicallySound or by following us on Twitter @bioethicsgov. Stay tuned for the eighth episode in our series, “Ethically Impossible,” which will be available on October 31, 2016. We welcome comments and feedback at info@bioethics.gov.

 

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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.

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