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

“Introducing New Guide to Democratic Deliberation for Public Health Ethics Professionals”

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has released a set of new educational materials focused on democratic deliberation in public health ethics. This set of training materials builds on the content of the Bioethics Commission’s report, Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology.

As outlined in Bioethics for Every Generation, democratic deliberation is a method of decision making that can help groups to identify reasonable options for action when faced with questions or complex topics without a clear consensus about the way forward. The new educational materials are designed for public health professionals, including professionals on public health ethics committees, who often face such issues in their daily work. The Guide to Deliberation for Public Health Professionals provides a condensed overview of the purposes and process of democratic deliberation, adapted from Appendix 1 of Bioethics for Every Generation.

The Bioethics Commission has also released two sets of deliberative scenarios and facilitator guides focusing on examples of how democratic deliberation might be used in relation to scenarios public health professionals are likely to encounter. One set of materials presents a scenario related to measles, mumps, and rubella vaccination policies in an immigrant community. The other describes a scenario focused on seasonal influenza vaccination policies for employees of a local health department.

The deliberative scenarios also provide suggestions for additional reading. The facilitator guides provide specific instructions for facilitating the deliberation, including questions to guide and shape the discussion and develop and present policy recommendations. In addition, the facilitator guide provides additional reading based on the role played in the deliberation, for example, whether one is adopting the perspective of a public health nurse or a member of the affected community.

The deliberative scenarios and facilitator guides draw from contemporary ethical questions and are designed to provide public health professionals with tools to integrate bioethics in public health practice.

The new materials are designed to introduce public health professionals and public health ethics committees to the process of democratic deliberation and highlight the benefits that democratic deliberation in developing public health policy and practice.

All of these resources are available for free download, and can be integrated into or adapted for existing or new curricula. All Bioethics Commission educational materials are free and available at www.bioethics.gov/education. The Bioethics Commission encourages feedback on its materials at education@bioethics.gov.

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Ethically Sound Episode 6: New Directions

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

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

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

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

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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Introducing New Deliberative Scenario and Teacher Companion from the Bioethics Commission: “Return of Genetic Research Results”

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has released two new educational materials, “Deliberative Scenario: Return of Genetic Research Results” and “Teacher Companion for Deliberative Scenario: Return of Genetic Research Results.” This new deliberative scenario and teacher companion build on the work of two of the Bioethics Commission’s reports, Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts (Anticipate and Communicate) and Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology.

Deliberative Scenario: Return of Genetic Research Results” highlights contemporary ethical questions about incidental and secondary findings that can result from genetic testing.

This scenario, like others the Bioethics Commission has released, presents an outline of ethically challenging situations that can provide students an opportunity to practice deliberation.

The “Teacher Companion for Deliberative Scenario: Return of Genetic Research Results” provides teachers with specific instructions for facilitating deliberations for the scenarios in “Deliberative Scenario: Return of Genetic Research Results.” These new educational materials are designed to facilitate deliberation on bioethical issues that have been addressed by the Bioethics Commission, and provide students and teachers with the means to enhance and enrich interdisciplinary ethics education.

These new educational resources are part of a collection of over 60 educational materials that the Bioethics Commission has developed throughout its tenure to support the integration of bioethics education in many disciplines in traditional and nontraditional educational and professional settings. This collection includes a series of teaching tools for students at various educational levels, including topic-based modules, case studies, deliberative scenarios, videos, webinars, and empirical research resources, that address a variety of ethical issues related to public health emergencies, whole genome sequencing, human subjects research, and more.

All of these resources are available for free download and can be integrated into or adapted for existing science or ethics curricula. All Bioethics Commission educational materials are free and available at www.bioethics.gov/education. The Bioethics Commission encourages feedback on its materials at education@bioethics.gov.

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Ethically Sound Episode 2: Ethics and Ebola

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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Ethically Sound Episode 1: Safeguarding Children

Since the Bioethics Commission was established via 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 to neuroscience to whole genome sequencing. In an effort to share the Bioethics Commission’s work with a wide variety of audiences, we are issuing a new podcast series called Ethically Sound.  Today’s episode, the first in the series, focuses on the Commission’s report Safeguarding Children: Pediatric Medical Countermeasure Research, which addressed the ethically challenging topic of when and how to test pediatric medical countermeasures for possible bioterrorism agents. When and how, for example, should we test an anthrax vaccine, approved for adults, in children?

The Ethically Sound: Safeguarding Children podcast centers around the question: How can we best protect children in the event of a bioterrorism attack? At the time this report was written, a vaccine for anthrax had only been tested in adults, but not in children. The Commission was asked to provide recommendations on how this vaccine could be safely tested in children, and when the vaccine would be ethically permissible to test.

The podcast opens with a narrative from Dr. Suzet McKinney, who is the Executive Director of the Illinois Medical District Commission. Dr. McKinney discusses how her public health training taught her that vaccines were largely beneficial, but the thought of an anthrax vaccine that had not been tested in children was a cause for concern. “If there were an anthrax bioterrorism attack in the US and the government determined a need to immunize children with a vaccine that had not been tested and deemed safe, experience tells me that even the most aggressive and comprehensive efforts to educate parents about the risks and potential benefits will be met with anxiety, fear, protest and apprehension… even I would have difficulty agreeing to an untested anthrax vaccine for my own child in the absence of a real, credible threat of attack.”

Hillary Wicai Viers, a former Communications Director with the Commission, interviewed Commission Member Col. Nelson Michael, the Director of the U.S. Military HIV Research Program at Walter Reed Army Medical Institute of Research. Col. Michael discussed his military background, and how the Commission came together to address a particularly sensitive topic. When asked about the most challenging aspect of this topic, Col. Michael said, “Research with children is ethically different from research with other groups, especially when the research in question promises really no direct prospect of benefit for the participants. This was really the heart of our matter. [While] competent adults can volunteer and give their consent and can accept risks and benefits for doing research, children really can’t do that legally or ethically. [As] a consequence, that really posed lots of dilemmas for us as a deliberate group.”

The podcast is available to interested listeners on our website, on our SoundCloud, and will launch shortly on YouTube and iTunes pages. Listeners can also follow the podcast using the hashtag #EthicallySound or following us on twitter @bioethicsgov. Stay tuned for the second episode on our series, “Ethics and Ebola,” which will be available on September 19. We welcome comments and feedback at info@bioethics.gov.

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Introducing the Bioethics Commission’s New Educational Resource: “Classroom Discussion Guide on Ethics and Incidental Findings”

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has released a new discussion guide titled “Classroom Discussion Guide on Ethics and Incidental Findings.” This guide is designed to facilitate students’ engagement with the ethical issues surrounding incidental and secondary findings. This guide builds on the work of the Bioethics Commission’s report Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts

This guide introduces students of various levels to the ethical issues related to incidental and secondary findings. The guide provides a set of discussion questions to help students understand, evaluate, and reflect on these ethical challenges. The guide also includes three case studies that demonstrate the real-life impact that incidental and secondary findings have had in clinical, research, and direct-to-consumer settings.

This guide is part of a series of classroom discussion guides that have been developed for students at various educational levels, and includes discussion guides on ethical issues related to public health emergencies and neuroscience. We have also developed a series of teaching tools, including topic-based modules, case studies, deliberative scenarios, and empirical research resources. All resources are available for free download, and can be integrated into existing science or ethics curricula, or used to create a new course.

Please stay tuned for forthcoming educational materials, including a new deliberative scenario and teacher companion about incidental findings.

All Bioethics Commission educational materials are free and available at www.bioethics.gov/education. The Bioethics Commission encourages feedback on its materials at education@bioethics.gov.

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