Bioethics Commission Staff – 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 Mon, 05 Dec 2016 16:00:04 +0000 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 On behalf of the Bioethics Commission, we thank our readers for their continued interest in the work of the commission.

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New Bioethics Commission Report Lays Out Roadmap for Tackling Tough Ethical Questions Thu, 12 May 2016 12:01:20 +0000 The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) today released, Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology. This tenth report sets forth a series of recommendations for how to tackle the most pressing ethical questions that confront our nation, and ensure everyone in our society is equipped to address ethical dilemmas that arise in everyday life.

The report marks the culmination of the Bioethics Commission’s work over the last eight years and draws on its experience using democratic deliberation to advise the President on complicated ethical issues in health, science, and technology.

The field of bioethics is often called upon to resolve seemingly intractable ethical conflicts and challenges. This Bioethics Commission has tackled challenges that face us all as individuals, professionals, family members, and members of society in an increasingly interconnected world.

To help national advisory bodies as well as smaller, community-level organizations such as schools, churches, hospitals, and universities, approach issues that have no clear right or wrong answer, the Bioethics Commission has outlined five key steps in the process of democratic deliberation:

  1. Begin with an open question and consider distinct points of view
  2. Time the deliberation for maximum impact
  3. Invite input from experts and the public
  4. Foster open discussion and debate
  5. Develop detailed, actionable recommendations

Emphasizing the important role that education plays–across the lifespan–in preparing individuals with the skills they need to navigate complex challenges, the Bioethics Commission calls on educators, from primary school through professional training and beyond, to incorporate ethics education into their curricula.

The report highlights educational programs and classroom activities from across the country and abroad, such as The Ethics Bowl, that teach students how to share their views and engage in thoughtful and respectful deliberation of a solution. The Bioethics Commission also provides recommendations to ensure teachers are trained to effectively deliver ethics education.

As the Bioethics Commission looks to the future and considers the role of national bioethics advisory bodies, it underscores the important functions of supporting public bioethics education and engaging in deliberation, and their symbiotic relationship. Deliberation and ethics education work together: education is required for informed deliberation about complex bioethical issues, and deliberation results in a deeper understanding of ethical dimensions of difficult problems.

Read full report:

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The History of Bioethics Series – National Bioethics Commissions Wed, 27 Jan 2016 16:33:35 +0000 This is the first post in our “History of Bioethics” series in which we will examine some of the seminal events that shaped the landscape of bioethics and its practice in the world today. This first blog will focus on the creation of the national bioethics advisory bodies in the United States and their different iterations throughout the years.

From our History of Bioethics Commissions page…

The current advisory group, the Presidential Commission for the Study of Bioethical Issues, established by a 2009 Executive Order from President Barack Obama, continues the more than 40-year history of bodies established by the President or Congress to provide expert advice on topics related to bioethics. These groups have differed in their composition, methods, and areas of focus, yet they all have shared share a common goal – to promote the careful examination and analysis of ethical considerations that underlie our nation’s activities in science, medicine, and technology.

The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1974-78) is generally viewed as the first national bioethics commission. Established as part of the 1974 National Research Act, the National Commission is best known for the development of the Belmont Report, a document that laid out the ethical principles and guidelines for research involving human subjects. This document has been used as a basis for further federal regulations in the area of human subjects protections.

The Presidential Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1978-83), also established by Congress, produced reports on foregoing life-sustaining treatment and access to health care, among other topics. Its 1981 report Defining Death was the basis of the Uniform Determination of Death Act, a model law that was enacted by most U.S. states.

The Advisory Committee on Human Radiation Experiments (1994-95) was created by President Bill Clinton to investigate human radiation experiments conducted from 1944 -1974 as well as radiation intentionally released into the environment for research purposes. The committee considered the ethical and scientific standards for evaluating these events and provided recommendations aimed at ensuring that similar events could not be repeated.

Since the mid-1990s, each of the past three presidents has established bioethics commissions to explore ethical issues in science, medicine, and technology. The National Bioethics Advisory Commission (1996-2001), created by President Clinton, examined topics including cloning, human stem cell research, and research involving human subjects. President George W. Bush established the President’s Council on Bioethics (2001-2009), which issued reports on stem cell research, human enhancement, and reproductive technologies, among other topics.

The Presidential Commission for the Study of Bioethical Issues was established in November 2009 and is chaired by Dr. Amy Gutmann, President of the University of Pennsylvania and renowned political philosopher and educator. The Bioethics Commission has dealt with topics ranging from neuroscience, to Ebola, to whole genome sequencing, and more. All of the Bioethics Commission’s reports can be viewed and downloaded for free at A major point of emphasis for the current Bioethics Commission is to educate and inform the nation about bioethics. So far, in its tenure, the Bioethics Commission has created and disseminated materials for a variety of audiences in traditional and non-traditional educational settings. To date over fifty education materials have been developed and are disseminated freely through the website.

Stay tuned to this blog for upcoming posts on the “History of Bioethics”!

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Introducing “Anticipate and Communicate” Thu, 12 Dec 2013 19:01:59 +0000 We all need to know how to better manage health information that we did not expect. Today, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) released its report Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts. Commission Chair Amy Gutmann, Ph.D., discussed the report in a Policy Forum piece published today in Science.

No one is immune from the prospect of discovering something unexpected when undergoing a routine test at the doctor’s office, participating in research, or even submitting a cheek swab to a direct-to-consumer (DTC) company for analysis. Regardless of the setting or the test or procedure, when it comes to incidental findings, the Bioethics Commission offered this piece of overarching advice: anticipate and communicate. The Bioethics Commission recommended that all practitioners anticipate and plan for incidental findings so that patients, research participants, and consumers are informed ahead of time about what to expect.

Incidental findings, traditionally defined as results that arise outside the purpose for which a test or procedure was originally conducted, give rise to a range of practical and ethical challenges for recipients and practitioners. Secondary findings, like incidental findings, are not the primary target of a test or procedure but are actively sought in the process of testing. Incidental and secondary findings can be lifesaving if their discovery leads to treatment that would not otherwise have been possible, but also can lead to uncertainty and distress with no corresponding benefit if they identify conditions for which no effective treatment is available.

The Bioethics Commission concluded that certain actions should be taken regardless of where incidental or secondary findings arise, and made five recommendations intended to apply across contexts. The first overarching recommendation aimed to ensure that individuals are informed about the possibility of incidental and secondary findings before they are tested, and of any plan for disclosing and managing these findings. Because of the fundamental importance of informing potential recipients—including respect for recipient autonomy, beneficence, and informed decision making—the recommendation was further specified and applied in the clinical, research, and DTC contexts.

The Bioethics Commission also recognized the importance of developing an evidence base to inform decisions about how best to manage incidental and secondary findings. In its second overarching recommendation, the Bioethics Commission called on professional groups to develop guidelines to categorize the findings likely to arise from each diagnostic modality and develop best practices for managing these findings. The third recommendation called for research about the types and frequency of incidental and secondary findings; the costs, benefits, and harms associated with these findings; and recipient and practitioner preferences with regard to these findings.

Informing individuals works best when those involved—both practitioners and potential recipients—are informed about the consequences of incidental and secondary findings. Accordingly, in its fourth recommendation, the Bioethics Commission called for the preparation of educational materials to inform all stakeholders—including practitioners, institutional review boards, and potential recipients—about the ethical, practical, and legal implications of incidental and secondary findings.

Finally, the Bioethics Commission recognized that existing disparities could lead to inequitable access to the counseling and care needed to appropriately manage incidental and secondary findings. In its fifth recommendation, the Bioethics Commission noted that the principle of justice and fairness requires affordable access to quality information, both before and after testing, about incidental and secondary findings that could arise.

These overarching recommendations are supplemented by recommendations specific to the clinical, research, and DTC contexts that will be described in subsequent blog posts.

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