Bioethics History – blog.Bioethics.gov https://bioethicsarchive.georgetown.edu/pcsbi/blog The blog of the 2009 - 2017 Presidential Commission for the Study of Bioethical Issues Mon, 09 Jan 2017 23:23:29 +0000 en-US hourly 1 Looking Back at the Bioethics Commission’s Blog https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/12/05/looking-back-at-the-bioethics-commissions-blog/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/12/05/looking-back-at-the-bioethics-commissions-blog/#respond Mon, 05 Dec 2016 16:00:04 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=2125 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.

]]>
https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/12/05/looking-back-at-the-bioethics-commissions-blog/feed/ 0
Ethically Sound podcast: Full series now available https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/11/23/ethically-sound-podcast-full-series-now-available/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/11/23/ethically-sound-podcast-full-series-now-available/#respond Wed, 23 Nov 2016 16:00:54 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=2113 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.

]]>
https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/11/23/ethically-sound-podcast-full-series-now-available/feed/ 0
Ethically Sound Episode 10: Charting a Path Forward https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/11/21/ethically-sound-episode-10-charting-a-path-forward/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/11/21/ethically-sound-episode-10-charting-a-path-forward/#respond Mon, 21 Nov 2016 16:00:01 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=2052 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.

]]>
https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/11/21/ethically-sound-episode-10-charting-a-path-forward/feed/ 0
Ethically Sound Episode 4: Privacy and Progress https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/10/03/ethically-sound-episode-4-privacy-and-progress/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/10/03/ethically-sound-episode-4-privacy-and-progress/#respond Mon, 03 Oct 2016 14:00:13 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1988 The Bioethics Commission has released the fourth episode, “Privacy and Progress,” in its new podcast series Ethically Sound.  The series is dedicated to bringing the Bioethics Commission’s body of work to a broad audience. The Bioethics Commission, established in 2009 by President Barack Obama, has produced 10 reports, each of which focuses on key ethical considerations surrounding a particular topic. Today’s episode focuses on the Commission’s report Privacy and Progress in Whole Genome Sequencing.

Privacy and Progress addresses complex privacy concerns related to a powerful and newly accessible technology. Whole genome sequencing has evolved from an ambitious scientific aspiration to a readily available technique with tremendous potential to advance clinical care and medical research. The extent of highly personal information collected through whole genome sequencing raised concerns about protecting the privacy of individuals whose genomes were sequenced. In addressing the ethical dilemmas surrounding whole genome sequencing, the Commission considered the potential benefits of whole genome sequencing, as well as concerns related to privacy protection. Throughout its public deliberations, the Commission considered a variety of perspectives on the issue. In its report, the Commission presented a series of recommendations regarding access to and use of genetic information, including a recommendation that federal and state governments ensure a consistent set of privacy protections for genetic information.

The podcast opens with a narrative from Retta Beery, a mother and patient advocate who shared the story of her children with the Commission. Ms. Beery’s twin children, Noah and Alexis, suffered from a debilitating condition for the majority of their childhood. Initially diagnosed with cerebral palsy, Ms. Beery conducted her own research and discovered that her children needed to be treated with supplements of the amino acid levodopa (L-Dopa). However, even with the supplements, Ms. Beery’s daughter, Alexis, continued to suffer from a periodic inability to breathe, which sometimes required trips to the emergency department. When Noah and Alexis were 14, Ms. Beery had their genomes sequenced, which led to the discovery of a genetic mutation. Only then were physicians able to determine their precise diagnosis and appropriate treatment plan. After this discovery, Ms. Beery said “Alexis was back to running and living a full life. Whole genome sequencing, literally, saved her life.”

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 the impact that the report has had since its released, and how the diverse backgrounds of the Bioethics Commission members facilitated deliberations about the tension between the right to privacy and the immense potential progress that could result from whole genome sequencing. Regarding the Commission’s diverse backgrounds, Dr. Allen said, “This wide variety of backgrounds meant that some of the questions asked were not just the obvious ones about how data can be protected, but also deep, deep understandings and different understandings of why data should be protected.”

Episode 4 is now on our website, as well as on our SoundCloud, YouTube and iTunes pages. In addition to this episode, listeners can access the first three episodes “Safeguarding Children,”Ethics and Ebola,” and “Anticipate and Communicate.” Listeners can follow the podcast using the hashtag #EthicallySound or by following us on Twitter @bioethicsgov. Stay tuned for the fifth episode in our series, “Gray Matters,” which will be available on October 10, 2016. We welcome comments and feedback at info@bioethics.gov.

]]>
https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/10/03/ethically-sound-episode-4-privacy-and-progress/feed/ 0
Exploring Democratic Deliberation https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/09/28/exploring-democratic-deliberation/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/09/28/exploring-democratic-deliberation/#respond Wed, 28 Sep 2016 14:09:38 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1959 Bioethics Commission member Col. Nelson Michael was interviewed in June by BioEdge, a bioethics news site, about the Commission’s capstone report Bioethics for Every Generation: Deliberation and Education in Health, Science and Technology. In a previous post, we discussed Col. Michael’s discussion of lifelong bioethics education. This post will focus on Col. Michael’s discussion of democratic deliberation, which the Commission recommends in its report.

Democratic deliberation is a method of decision-making that brings diverse voices to the table, and promotes mutual respect and reason-giving in order to identify areas of agreement to facilitate solutions to challenging problems. The goal of reaching consensus on a way forward distinguishes deliberation from debate, which involves participants trying to persuade others that their arguments are correct and more compelling than their fellow participants’ arguments. While participants are encouraged to use facts and reasons to support their various positions during the deliberative process, democratic deliberation is intended to be a mutually respectful process, with all participants entering the deliberation with an open mind and a willingness to consider other perspectives.

Xavier Symons, the BioEdge interviewer, asked Col. Michael about the criticism that democratic deliberation “smother[ed] substantial debate in focus groups and reports,” citing the debates and public deliberation that occurred when the Human Fertilisation and Embryology Authority (HFEA) in the United Kingdom considered the ethical implications of transferring a healthy nucleus from a mother’s egg to a donor egg in order to avoid certain mitochondrial diseases. Col. Michael responded by noting that “the discussions were facilitated using democratic deliberation…this distinguished those conversations from the kind of debates we are more accustomed to. Democratic deliberation is not foolproof—limitations and challenges exist with every method of decision making. However…deliberation has many advantages. It provides a morally and practically defensible way for addressing hyperpartisan gridlock. It also promotes mutual respect rather than fueling the sharp polarization and heightened differences that make consensus and legitimate outcomes nearly impossible in our current context.”

The Bioethics Commission outlined steps that decision-making bodies can take to engage in democratic deliberation. Deliberation begins with an open question, for which there might be numerous possible paths forward. The Commission emphasized that it is preferable to conduct deliberations with enough time to affect policy decisions. For example, when the Commission considered whether testing an anthrax vaccine on children was ethically permissible, it did so at a time when the country was not facing an anthrax attack, which gave the Commission time to consult with experts, reflect on the empirical and moral dimensions, and make reasoned recommendations. However, the luxury of time is not always possible in emergency circumstances. The Commission encouraged public officials to anticipate as much as possible potential ethical challenges that could arise during emergency situations and address these challenges in advance, since deliberation might not be possible in the midst of a crisis. In order to fully consider the implications of the question at hand, deliberation calls for consulting experts and members of the public alike. Stakeholders from all walks of life, whether they are scholars in the field or community members and leaders, have an important perspective to contribute, and it is necessary to consider these varied perspectives to come to a solution. Participants in the deliberation are encouraged to openly discuss their various perspectives. While vigorous discussion can be a part of the deliberative process, participants must use accessible and explicit reasons to support their arguments, and must maintain a mutually respectful environment throughout the process. At the end of deliberation, participants develop a detailed plan of action that emerges from the deliberation, which includes addressing ethical duties towards those who are affected by the plan.

We have produced a series of educational materials related to democratic deliberation. The “Guide to Classroom Deliberation for Students and Teachers” introduces the deliberative process in a manner suitable for classroom environments. The Commission has also produced several deliberative scenarios that can be used as the basis for deliberation around an ethically challenging topic. The Commission has also produced “Five Steps for Effective Deliberation” in conjunction with the report Bioethics for Every Generation.

The Bioethics Commission’s educational materials and reports can be viewed and downloaded for free at www.bioethics.gov. The Bioethics Commission welcomes comments and feedback on its materials at info@bioethics.gov.

]]>
https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/09/28/exploring-democratic-deliberation/feed/ 0
Bioethics really is For Every Generation: Vice Chair publishes editorial on K-12 Education https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/07/18/bioethics-really-is-for-every-generation-vice-chair-publishes-editorial-on-k-12-education/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/07/18/bioethics-really-is-for-every-generation-vice-chair-publishes-editorial-on-k-12-education/#respond Mon, 18 Jul 2016 10:00:33 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1874 James Wagner, Vice Chair of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission), recently published a commentary in Education Week. In this piece on the Bioethics Commission’s tenth report, Bioethics for Every Generation, Dr. Wagner notes that early ethics education:

“prepare[s] students for the road ahead. Each of us will face crucial bioethical decisions in our lives—how to make difficult treatment choices when diagnosed with an illness, how best to care for a sick or elderly loved one, or whether to adopt new cutting-edge technologies to detect a genetic disorder or attack a neurological disease. Ethics education can help prepare us to tackle these tough questions.”

The Bioethics Commission’s report delineates how ethics education can be tailored for different educational levels and life stages (see Fig. 4, adapted from Bioethics for Every Generation, p. Wagner K2 Companion Blog Adapted Figure 4 Cleared 7.12.16 69). Dr. Wagner highlighted key ways to integrate bioethics education at the primary and secondary levels. The Bioethics Commission’s recommendations at these levels included:

  • Recommendation 4: Implement Foundational Board-Based Ethics Education at all Levels: Educators at all levels, from preschool to postsecondary and professional schools, should integrate ethics education across the curriculum to prepare students for engaging with morally complex questions in a diverse range of subjects. Ethics education should include attention to both the development of moral character and virtue as well as the cultivation of ethical reasoning and decision-making skills that can be deployed in a bioethics context. Methods of ethics education should be evidence-based and grounded in best practices.
  • Recommendation 6: Support Opportunities for Teacher Training in Bioethics Education: Education policymakers, teacher training programs, and other funders should support development of teacher training in ethics education to prepare teachers of all subjects to facilitate constructive bioethical conversations in their classrooms. Teacher training programs should anticipate existing educational inequities and provide teachers and students with equitable access to ethics education, with an aim of preparing all students for the bioethical questions that might arise during the course of their lives.

As Dr. Wagner concludes, Bioethics for Every Generation ties together educational recommendations the Bioethics Commission has made over its tenure: “When we strengthen ethics education for future scientists and clinicians and for every member the public, we will be better equipped to move forward as individuals and as a nation. Our hope is that every generation can “do better” as we face the dynamic future of that awaits us.”

For more information on the Bioethics Commission’s educational materials that accompany their reports, please explore our education page: http://education.

]]>
https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/07/18/bioethics-really-is-for-every-generation-vice-chair-publishes-editorial-on-k-12-education/feed/ 0
The History of Bioethics Series – National Bioethics Commissions https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/01/27/the-history-of-bioethics-series-national-bioethics-commissions/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/01/27/the-history-of-bioethics-series-national-bioethics-commissions/#respond Wed, 27 Jan 2016 16:33:35 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1783 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”!

]]>
https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/01/27/the-history-of-bioethics-series-national-bioethics-commissions/feed/ 0
Bioethics Commission Attends ASBH 2015 https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/11/04/bioethics-commission-attends-asbh-2015/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/11/04/bioethics-commission-attends-asbh-2015/#respond Wed, 04 Nov 2015 17:36:57 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1742 Several staff and members of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) attended the American Society for Bioethics and Humanities (ASBH) annual meeting, held in Houston, Texas October 22-25, 2015. ASBH is a diverse organization of professionals and students engaged in clinical and academic bioethics and the medical humanities. Along with leading multiple sessions on Bioethics Commission work, the Bioethics Commission was pleased to host a booth in the conference exhibition hall. The exhibit featured Bioethics Commission reports, including its most recent reports, Gray Matters: Integrative Approaches for Neuroscience, Ethics, and Society (Gray Matters, Vol. 1), Gray Matters: Topics at the Intersection of Neuroscience, Ethics, and Society (Gray Matters, Vol. 2), and Ethics and Ebola: Public Health Planning and Response. The Bioethics Commission also distributed “Ethically Impossible” STD Research in Guatemala from 1946 to 1948 and Moral Science: Protecting Participants in Human Subjects Research. For others who were unable to attend ASBH, all materials are available for free download at bioethics.gov.

ASBH provided an opportunity to interact with colleagues from across the bioethics community; many attendees reported using our educational resources in their classrooms. The Bioethics Commission welcomes feedback and likes to hear how its materials are being used—if you have used our materials and are interested in sharing your experience, please email education@bioethics.gov!

The Bioethics Commission staff received many great questions at the exhibit. Here are some of the most frequently asked questions:

What is the Bioethics Commission currently working on?
The Bioethics Commission is working on a project on deliberation and ethics education. The Bioethics Commission stands behind strong democratic deliberation and enhancing ethics education. Throughout its tenure, Bioethics Commission members have modeled productive deliberation about a number of controversial topics. The Bioethics Commission has made a dozen recommendations about enhancing public and bioethics education, and the staff has produced a variety of educational materials based on report topics. This project on deliberation and education will be the Bioethics Commission’s capstone report, and will make recommendations about how these areas can mutually reinforce each other.

How does the Bioethics Commission choose the topics that it works on?
Topics come before the Bioethics Commission in two ways. The Executive Office of the President or a member of the President’s cabinet can ask the Bioethics Commission to study a particular topic or question and recommend an ethical way forward. The Bioethics Commission also can choose a topic based on pressing issues in the field.

How does the Bioethics Commission promote public bioethics?
All Bioethics Commission deliberations occur in public during its quarterly meetings. Anyone who is interested may attend these public meetings, or watch the meeting via live webcast at bioethics.gov. These meetings provide a unique opportunity to witness the live deliberations of a national bioethics commission—public bioethics in action. The Bioethics Commission welcomes input from anyone wishing to provide public comment on any issue before it, and is particularly interested in receiving comments and questions during meetings that are responsive to specific sessions. The Bioethics Commission’s next meeting will be held on November 17, 2015 in Arlington, VA. Written comments are accepted in advance of each meeting; please address written comments by email to info@bioethics.gov.

How does the Bioethics Commission disseminate its work?

As a part of its ongoing goal to educate the public and stakeholders about the Bioethics Commission’s recommendations, members and staff participate in many outreach events each year. In addition to discussing the findings of the Commission’s reports, the staff has produced a variety of educational materials based on report topics with the goal of making ethics accessible to a variety of stakeholders in both traditional and nontraditional education contexts.

What happens to the Bioethics Commission after President Obama’s term is over?
Like all federal advisory bodies, the Bioethics Commission must be renewed every two years. The Executive Order under which the Bioethics Commission currently operates has been extended until September 2017. However, if history repeats itself, it is likely that the Bioethics Commission in its current form will complete its work at the close of President Obama’s term in January 2017. At that time, it is also expected—though not guaranteed—that the next president will establish his or her own bioethics commission.

Thanks to all who stopped by our booth this year!

 

]]>
https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/11/04/bioethics-commission-attends-asbh-2015/feed/ 0
How to Elevate Bioethics Deliberations to a National Level https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/05/27/how-elevate-bioethics-deliberations-national-level/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/05/27/how-elevate-bioethics-deliberations-national-level/#respond Wed, 27 May 2015 17:32:16 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1641 The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) continued its discussion about democratic deliberation in bioethics and turned its attention to how bioethics issues are treated in the national dialogue, and the role of national bodies like the Bioethics Commission in fostering democratic deliberation on bioethics. The Bioethics Commission heard from F. Daniel Davis, Ph.D., the director of bioethics at the Geisinger Health System and former executive director of the President’s Council on Bioethics under President George W. Bush, and Jason Schwartz, Ph.D., M. Bioethics, the Harold T. Shapiro Fellow in Bioethics at the University Center for Human Values, Princeton University.

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

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

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

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

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

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

]]>
https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/05/27/how-elevate-bioethics-deliberations-national-level/feed/ 0
The Bioethics Commission’s Meeting 20 Milestone https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/01/20/the-bioethics-commissions-meeting-20-milestone/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/01/20/the-bioethics-commissions-meeting-20-milestone/#respond Tue, 20 Jan 2015 17:18:15 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1516 This February will mark an important milestone for the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission); the Bioethics Commission will hold its 20th public meeting. The 2-day meeting will be held February 5-6, 2015, in Washington, D.C. Since President Obama issued the Executive Order establishing the Commission on November 24, 2009, it has convened quarterly each year in order to publically discuss and deliberate various bioethical topics. As a Federal Advisory Committee, the Commission conducts all meetings and deliberations in public.

The Bioethics Commission held its first public meeting July 8-9, 2010 in Washington, D.C. to discuss its first topic, synthetic biology and the ethics of new technologies. The Commission has since covered a wide breadth of topics including privacy and genomic sequencing, ethical treatment of research participants, ethical duties of returning incidental findings, and the ethical conduct of neuroscience research. This year Commission meetings have focused on neuroscience; bioethics education and deliberation; and public health emergency response, with a focus on the current Ebola virus disease (EVD) epidemic.

During its quarterly meetings, Commission members hear from experts relevant to the topic being deliberated. After meeting 20, the Commission will have heard from more than 200 speakers. These speakers have come from across the U.S. and the world, and represent a variety of disciplines and interests including science, technology, law, medicine, and affected communities. Presentations from these experts provide Commission members with background information and lay the foundation for their deliberations. The roundtable discussions that occur during the public meetings serve to inform the recommendations published in each report. After meeting 20, the Commission will have engaged in more than 135 hours of public discussion and deliberation to inform its recommendations.

The Bioethics Commission does not rely on one ethical framework to guide its deliberations and recommendations. Instead, the Commission often draws upon broader ethical principles to inform its conversations and resulting analyses and recommendations. Some key bioethical principles that have run throughout many of the Commission’s reports include beneficence, democratic deliberation, respect for persons, as well as justice and fairness.

At meeting 20 the Bioethics Commission will continue to discuss the ethical considerations of neuroscience research, as well as public health emergency response in the context of the current EVD epidemic. Details, including the meeting location and agenda, will be posted to Bioethics.gov on the Meeting page. Meetings are always open to the public, and guests are encouraged to attend. For those unable to attend, all meetings are webcast live and archived at Bioethics.gov/meetings. See you February 5-6, 2015!

]]>
https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/01/20/the-bioethics-commissions-meeting-20-milestone/feed/ 0