Rashmi Borah – 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 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 9: Bioethics for Every Generation https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/11/07/ethically-sound-episode-9-every-generation/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/11/07/ethically-sound-episode-9-every-generation/#respond Mon, 07 Nov 2016 17:53:07 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=2048 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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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 7: Moral Science https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/10/24/ethically-sound-episode-7-moral-science/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/10/24/ethically-sound-episode-7-moral-science/#respond Mon, 24 Oct 2016 15:00:46 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=2027 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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Ethically Sound Episode 6: New Directions https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/10/17/ethically-sound-episode-6-new-directions/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/10/17/ethically-sound-episode-6-new-directions/#respond Mon, 17 Oct 2016 15:00:43 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=2012 The Presidential Commission for the Study of Bioethical Issues bioethics_twitter-v3-08(Bioethics Commission) has
released the sixth episode, “New Directions“, in its new
podcast series Ethically Sound.  This podcast series is dedicated to bringing the Bioethics Commission’s body of work to a broad audience. The Bioethics Commission, established in 2009 by President Bara
ck Obama, has produced 10 reports, each of which focuses on key ethical considerations surrounding a particular topic. Today’s episode is based on the Bioethics Commission’s first report, New Directions: The Ethics of Synthetic Biology and Emerging Technologies.

New Directions was written in response to a charge from President Obama, after the announcement that researchers at the J. Craig Venter Institute had created the world’s first self-replicating synthetic genome in a bacterial cell. This news resulted in intense media coverage and hyped claims about the implications of this research. President Obama asked the Bioethics Commission to review the developing field of synthetic biology and to identify appropriate ethical boundaries that would both maximize public benefits and minimize risks. The Bioethics Commission considered a diverse range of perspectives on the direction and implications of synthetic biology throughout its public deliberations. Taking into consideration both the tremendous promise and the potential risks that could arise from developments in synthetic biology, the commission put forth 18 recommendations that outline important ethical considerations for synthetic biology. The recommendations include a call for increased federal oversight of research in synthetic biology, and a recommendation for incorporating ethics training for researchers in fields such as engineering and materials science, who might become involved in synthetic biology research.

The podcast opens with a narrative from Eleonore Pauwels, Senior Program Associate within the Science and Technology Innovation Program at the Woodrow Wilson Center. Ms. Pauwels shared her reaction to the announcement from the Venter Institute, and her perspective on how ethical issues would need to be addressed in this emerging technology. She said, “Today we still face an unresolved question: How do we develop a culture of inclusive public deliberation and decision-making that could guide integration of synthetic biology and all new technologies into society?”

The podcast also includes an interview with the Vice Chair of the Bioethics Commission and former President of Emory University, Dr. James Wagner. Hillary Wicai Viers, former Communications Director with the Bioethics Commission staff, conducted the interview. Dr. Wagner discussed the relevance of the commission’s report for current and future developments in synthetic biology, and how this first report set the tone for the rest of the commission’s body of work. Dr. Wagner noted that the ethical principles established in this report were foundational to subsequent projects, as well. He said, “We found ourselves in subsequent reports also recommending that there needs to be greater education in the area of bioethics, and education of our public to understand the current state of the art. We found ourselves coming back to those [ethical principles] over and over again in subsequent works that we did, whether it was work in neuroscience or work in genome sequencing.”

Episode 6 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 five episodes of Ethically Sound. Listeners can follow the podcast using the hashtag #EthicallySound or by following us on Twitter @bioethicsgov. Stay tuned for the seventh episode in our series, “Moral Science,” which will be available on October 24, 2016. We welcome comments and feedback at info@bioethics.gov.

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Ethically Sound Episode 5: Gray Matters https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/10/10/ethically-sound-episode-5/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/10/10/ethically-sound-episode-5/#respond Mon, 10 Oct 2016 14:00:14 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1937 The fifth episode of the Bioethics Commission’s podcast series Ethically Sound, “Gray Matters,” is now available. The Bioethics Commission has released 10 reports on a variety of ethically challenging topics. Ethical issues in neuroscience were the focus of the reports Gray Matters: Integrative Approaches for Neuroscience, Ethics, and Society (Volume 1), and Gray Matters: Topics at the Intersection of Neuroscience, Ethics, and Society (Volume 2).

The two Gray Matters reports responded to a charge from President Barack Obama, in conjunction with the announcement of the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative, a White House Grand Challenge. President Obama asked the Commission to “consider the potential implications of the discoveries that we expect will flow from studies of the brain.” In Gray Matters Volume 1, the Bioethics Commission recommended early and explicit integration of ethics into neuroscience research. In Gray Matters Volume 2, the Commission focused on three “cauldrons of controversy” in neuroscience: cognitive enhancement, research involving participants with impaired consent capacity, and the use of neuroscience in the legal system.

This episode of Ethically Sound opens with a narrative from Dr. Stephen Morse, Associate Director of the Center for Neuroscience and Society at the University of Pennsylvania. Dr. Morse discussed a case where neuroscience was used as the basis of an insanity defense in a murder trial, as the defendant had a cyst in his left frontal lobe that the defendant’s legal counsel argued had impaired his judgment. When discussing the two positions taken by the prosecution and the defense, Dr. Morse said, “The defense took the position that the prosecution was afraid of the expert evidence having to do with the brain tumor.”

The podcast also features Bioethics Commission member Dr. Stephan Hauser, Director of the University of California, San Francisco Weill Institute for Neurosciences, and Chair of the Department of Neurology. Hillary Wicai Viers, former Communications Director with the Bioethics Commission staff, conducted the interview. Dr. Hauser discussed the array of ethical challenges that the Bioethics Commission addressed in its reports, including the importance of integrating ethics into all stages of neuroscience research. Dr. Hauser said, “Well-designed, ethical neuroscience research will pave the way for progress that has the potential to benefit so many [people].”

Episode 5 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 four episodes “Safeguarding Children,” “Ethics and Ebola,” “Anticipate and Communicate,”and “Privacy and Progress.” Listeners can follow the podcast using #EthicallySound or by following us on Twitter @bioethicsgov. Stay tuned for the sixth episode in our series, “New Directions,” which will be available on October 17, 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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