Bioethics in Action – 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.

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Perspectives in learning: Incorporating discussion materials and activities on ethics into science curriculum. https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/12/02/perspectives-in-learning-incorporating-discussion-materials-and-activities-on-ethics-into-science-curriculum/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/12/02/perspectives-in-learning-incorporating-discussion-materials-and-activities-on-ethics-into-science-curriculum/#respond Fri, 02 Dec 2016 15:00:47 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=2135 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 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.

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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.

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Introducing “Ethically Sound Discussion Guide: Podcast Series Discussion Questions” https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/11/09/introducing-ethically-sound-discussion-guide-podcast-series-discussion-questions/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/11/09/introducing-ethically-sound-discussion-guide-podcast-series-discussion-questions/#respond Wed, 09 Nov 2016 18:29:05 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=2105 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 8: Ethically Impossible https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/10/31/ethically-sound-episode-8-ethically-impossible/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/10/31/ethically-sound-episode-8-ethically-impossible/#respond Mon, 31 Oct 2016 15:37:38 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=2045 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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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.

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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.

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Ethically Sound Episode 3: Anticipate and Communicate https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/09/26/ethically-sound-episode-3-anticipate-and-communicate/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/09/26/ethically-sound-episode-3-anticipate-and-communicate/#respond Mon, 26 Sep 2016 13:51:38 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1934 The third episode of the Bioethics Commission’s podcast series, Ethically Sound is now available. This 10-episode series has been created to bring the diverse body of the Commission’s work to a wide audience. Today’s episode, “Anticipate and Communicate,” focuses on the Commission’s sixth report Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings, which addressed how to ethically manage incidental findings—findings that lie outside the aim of a test or procedure—that arise in clinical, research, and direct-to-consumer contexts.

In the report, the Bioethics Commission analyzed the ethical issues related to incidental findings that could arise in clinical, research, and direct-to-consumer settings. During its public meetings, the Commission heard from individuals who have been affected by incidental findings, including Carol Krucoff, a yoga teacher and journalist. Ms. Krucoff spoke before the Commission about the discovery of her brain tumor, which was an incidental finding that resulted from an MRI taken after she fainted during a marathon. Ms. Krucoff opens this podcast by recounting her experience and sharing how the discovery of her incidental finding affected her life. She notes that “advances in imaging technology have made it increasingly common for healthy, asymptomatic people like me to learn of such a disturbing incidental finding.”

The podcast also features Bioethics Commission Member Dr. Christine Grady, Chief of the Department of Bioethics at the National Institutes of Health Clinical Center, who was interviewed by Hillary Wicai Viers, a former Communications Director with the Commission staff. Dr. Grady explains how her background as a researcher and as a nurse informed her understanding of the ethical challenges that incidental findings pose. Dr. Grady also shares how the diverse perspectives that the Commission members brought to the discussion helped address these ethical challenges in a wide range of contexts. “It was really very beneficial and helpful to hear from people who had received information about incidental findings and had vastly different experiences and perspectives on the matter,” Dr. Grady said in reference to the inclusion of diverse perspectives.

Episode 3: Anticipate and Communicate of Ethically Sound is available on our website, as well as on our SoundCloud, iTunes, and YouTube pages. In addition to this episode, listeners can access the first episode in this series, “Safeguarding Children,” and the second episode, “Ethics and Ebola.” Stay tuned for the fourth episode of Ethically Sound, “Privacy and Progress,” which will be available on October 3, 2016. We welcome comments and feedback at info@bioethics.gov.

 

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Ethically Sound Episode 2: Ethics and Ebola https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/09/19/ethically-sound-episode-2-ethics-and-ebola/ Mon, 19 Sep 2016 14:00:33 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1932

Since the Bioethics Commission was established through Executive Order in 2009 by President Barack Obama, it has released 10 reports on a variety of ethically challenging topics, including synthetic biology, neuroscience, and whole genome sequencing, among others. The Bioethics Commission is excited to release a new podcast series, Ethically Sound. Each episode features one of the Commission’s reports.  Today’s episode, the second in the series, focuses on the Commission’s report Ethics and Ebola: Public Health Planning and Response, which addresses several ethical challenges, including ethical dimensions of public health preparedness, ethical justification for U.S. engagement in global health response, the use of liberty-restricting public health interventions, and selected research ethics issues, that emerged during the response to the 2014-2016 Ebola epidemic in western Africa.

This podcast focuses on the use of restrictive measures, such as quarantine and travel restrictions. Upon their return from affected regions, some health care workers were subjected to restrictive measures by state governments and local public health agencies. Restrictive meaures are sometimes necessary during an epidemic in order to maintain public safety. However, some of the measures used during the Ebola epidemic were overly restrictive, and were issued by state governments and public health agencies in response to the public fear that accompanied Ebola, rather than on the best available scientific evidence. The Commission addressed the stigma and discrimination that can accompany public health emergencies, which can be exacerbated by the use of restrictive measures, and reviewed the historical use of such measures in response to other epidemics. The Commission recommended that governments and public health agencies use the least restrictive interventions necessary, such that interventions are grounded in the best available scientific evidence, and ensure that both the ethical and evidentiary rationale for these measures is clearly communicated, with particular attention to the needs of those most directly affected.

The podcast opens with Dr. Patricia Henwood, an emergency medicine physician and the co-founder and president of the PURE initiative, which examines the use of point-of-care ultrasounds in regions with limited resources. Dr. Henwood recounts her experience of traveling to Liberia during the Ebola epidemic to provide medical care to over 100 patients before the Commission during the Commission’s 20th public meeting. After her return, Dr. faced unclear guidance about what restrictive measures were necessary. Dr. Henwood decided to limit contact with friends and family members during her 21-day monitoring period so they would not have to undergo unnecessary measures. Of her experiences, Dr. Henwood said she and her colleagues were “often touted as heroes while working in West Africa, [but] felt like pariahs once we were back in the United States.”

The podcast also includes an interview with Commission member Dr. Barbara Atkinson, the Founding Dean of the University of Nevada, Las Vegas School of Medicine. Hillary Wicai Viers, former Communications Director with the Bioethics Commission, conducted this interview. Dr. Atkinson discussed some of the ethical challenges surrounding restrictive measures. Regarding the decisions surrounding the use of restrictive measures, Dr. Atkinson said “the people who were making the decisions at a state level were responding to the fear of the public, [not] the scientific facts. The public was very worried about the lethal nature of this virus, and so they responded in a political way, which was to segregate [health care workers].”

The podcast is available on our website, as well as on our SoundCloud, YouTube and iTunes pages. In addition to this episode, listeners also can access the first episode, “Safeguarding Children.” Listeners can follow the podcast using the hashtag #EthicallySound or following us on twitter @bioethicsgov. Stay tuned for the third episode in our series, “Anticipate and Communicate,” which will be available on September 26, 2016. We welcome comments and feedback at info@bioethics.gov.

 

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