bioethics – 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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The History of Bioethics Series – National Bioethics Commissions https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/01/27/the-history-of-bioethics-series-national-bioethics-commissions/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/01/27/the-history-of-bioethics-series-national-bioethics-commissions/#respond Wed, 27 Jan 2016 16:33:35 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1783 This is the first post in our “History of Bioethics” series in which we will examine some of the seminal events that shaped the landscape of bioethics and its practice in the world today. This first blog will focus on the creation of the national bioethics advisory bodies in the United States and their different iterations throughout the years.

From our History of Bioethics Commissions page…

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

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

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

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

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

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

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

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Public Bioethics https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/09/02/public-bioethics/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/09/02/public-bioethics/#respond Wed, 02 Sep 2015 16:16:39 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1691 In today’s opening session, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) turned its attention to facilitating public dialogue about bioethics. Democratic deliberation is a guiding principle of the Bioethics Commission. As outlined in its first report, New Directions: The Ethics of Synthetic Biology and Emerging Technologies, the Bioethics Commission believes that public discussion and debate promote outcomes that are inclusive, thoughtfully considered, and respectful of competing views. Learn more about the Bioethics Commission’s deliberative process in the video: “How does the Bioethics Commission work?

The Bioethics Commission heard from Dennis Thompson, Ph.D. of Harvard University; Sir Roland Jackson of ScienceWise; Marion Danis, M.D. of the National Institutes of Health Clinical Center, and Florence Evans, a participant in the “What’s Next California” deliberative polling exercise.

In Democracy and Disagreement, Thompson has argued that democratic deliberation can allow diverse groups separated by class, race, religion, and gender to explore an issue together in ways that allow their different views to stimulate a richer and more extensive discussion.

In this morning’s session, he pointed to the power of deliberative discussions to reach beyond the particular group or body involved, as people who participate become more interested in keeping the dialogue going in their everyday life.

“Deliberations can be propagated,” he said. “There is a study that found that citizens who participated in deliberative action are more likely to talk about the issues and engage with co-workers in ways they didn’t before, and this was an equal opportunity [engagement]. There was not a bias in favor of class and education.”

Jackson, whose organization, ScienceWise, is focused on fostering broader discussions of significant science and technology concerns in the UK, said it’s important to understand that consensus is not necessarily the goal of deliberative processes.

“These are not citizens’ juries or consensus conferences,” he said. “The richness of what comes back from deliberative dialogue is plural and conditional responses. It is then up to the decision maker, the policy maker, to draw on that to make their own conclusions.”

Danis described a specific approach to creating a deliberative process around health insurance policy decisions that uses a game board to facilitate discussions about the complicated array of trade-offs involved. She noted that the experience has demonstrated that “a structured public discussion regarding complex and contested priorities is possible, and the process can improve public understanding and foster meaningful dialogue.”

One challenge she has encountered involves moving the process to the next step—in which the information yielded from deliberative discussions influences policy decisions.

Evans shared her experience as a participant in “What’s Next California,” an innovative effort to draw more ordinary citizens into in-depth consideration and debate of pressing and controversial political issues facing Californians. Evans was impressed with how the deliberative approach prompted a more civil and respectful dialogue on such partisan topics.

“It was an amazing experience,” she said. “We were a bunch of strangers from a lot of different backgrounds…. But everyone was very respectful of each other… There were times when there were emotional responses that were highly charged but they did not dominate.”

After a short break, we will hear from two speakers who will explore fluency in science and ethics.

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Roundtable Discussion: Improving Public Dialogue of Bioethics https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/05/27/roundtable-discussion-improving-public-dialogue-of-bioethics/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/05/27/roundtable-discussion-improving-public-dialogue-of-bioethics/#respond Wed, 27 May 2015 20:18:49 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1649 The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) closed its discussion of democratic deliberation in bioethics and bioethics education with a roundtable discussion involving Commission members and presenters.

Amy Gutmann, Ph.D., Chair of the Bioethics Commission, kicked off the session by asking the panelists to share their thoughts on what the Bioethics Commission can do to improve the quality of public dialogue and deliberation on bioethics and the quality of bioethics education.

Following are highlights from the discussion:

Margaret Little, Ph.D., director of the Kennedy Institute of Ethics and associate professor in the philosophy department at Georgetown University, suggested that the Bioethics Commission help launch a series of experiments to promote informed deliberation on bioethics, both at universities and in communities. “This is a great model that is used in many places. Right now, there is an energy prize for $5 million to a community that reduces its carbon footprint,” Little noted. “So this is something with incentives and an aspirational mandate.”

“Watching is one thing; doing is another,” said James Fishkin, Ph.D., the Janet M. Peck Professor of International Communication and director of the Center for Deliberative Democracy at Stanford University. He urged the Bioethics Commission to undertake an exemplary project using democratic deliberation to spur public engagement in bioethics. “If you do it right, other commissions can follow in your footsteps,” he added.

F. Daniel Davis, Ph.D., the director of bioethics at the Geisinger Health System and former executive director of the President’s Council on Bioethics under President George W. Bush, said that there’s a need to make ethical knowledge more practical and less theoretical. He cited work he is doing with surgical residents, assessing their emotional intelligence as a way to reduce medical errors. The goal, he said, is to get the residents not only to recognize ethical issues but also to “operationalize that ethical knowledge and do so in a virtuous way.”

Jason Schwartz, Ph.D., M. Bioethics, the Harold T. Shapiro Fellow in Bioethics at the University Center for Human Values, Princeton University, asked the Bioethics Commission to think broadly in terms of the government entities that address bioethics issues. “Call attention to the fact that bioethics may not be the domain of bioethics alone,” he said, noting that many bodies that do not have bioethics in their name or mandate deal with bioethics issues. For example, bioethics is a factor in the how the Food and Drug Administration weighs the risks and benefits of pharmaceuticals, and in how vaccines are prioritized for development. “Ethical dimensions are largely ignored or cast aside or reshaped if they are exclusively technical or scientific questions,” Schwarz said.

Steven Joffe, M.D., M.P.H., the Vice Chair of Medical Ethics, Emanuel and Robert Hart Associate Professor of Medical Ethics and Health Policy and director of Penn Fellowship in Advanced Biomedical Ethics at University of Pennsylvania, emphasized the importance of promoting respectful public dialogues. As a model, he suggested presidential debates in which questions are asked by citizens sitting in a circle. “The citizens equip themselves incredibly well time after time after time. And those sorts of discussions, engaging the public about bioethical issues, I think, would be…incredibly powerful to promote the conversations we want to have.”

Connie Ulrich, Ph.D., R.N., F.A.A.N., an associate professor of bioethics and nursing in the Department of Biobehavioral Health Sciences at the University of Pennsylvania School of Nursing, cited a need for better communication. “Training and communication would absolutely help in bioethics education, so we can help people feel more confident to address the issues that they face.”

The Commission is scheduled to meet again on September 2 in Washington, D.C. For details, go to www.bioethics.gov.

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In Rush to Develop Ebola Therapies, a Debate Over Placebo Control https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/02/05/in-rush-to-develop-ebola-therapies-a-debate-over-placebo-control/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/02/05/in-rush-to-develop-ebola-therapies-a-debate-over-placebo-control/#respond Thu, 05 Feb 2015 16:44:05 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1526 This morning the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) resumed consideration of U.S. engagement in the global response to the current Ebola epidemic by examining ethical issues that arise when conducting research during a public health emergency.

As experts move to accelerate development of drugs and vaccines against Ebola, a debate has emerged over whether these therapies should be evaluated with the placebo randomized control approach. This type of research involves clinical trials in which one group of volunteers receives the actual vaccine or drug candidate and another group receives a placebo.

Many clinicians consider the placebo-control approach to be the gold standard for determining the efficacy of a new treatment. But tension in western Africa today involves how scientists and policy makers should prioritize humanitarian and scientific concerns as they address both the immediate crisis and seek evidence that can be applied to future outbreaks.

Clement A. Adebamowo, B.M., Ch.B., F.W.A.C.S., F.A.C.S., Sc.D., a Professor of Epidemiology and Public Health at the University of Maryland School of Medicine, told members of the Bioethics Commission that the placebo-control approach provides very strong evidence. But Adebamowo, who was closely involved with Nigeria’s Ebola response as chair of Nigeria’s National Health Research Ethics Committee, said Nigerian health authorities have concluded there are instances in which other approaches may be warranted.

“We believe that these things should not be taken as doctrinaire positions,” he said. “That is why the Nigerian ethics committee issued the guidance statement saying we are going allow the use of therapies that have not completed the standard clinical trial development pathway in the context of this epidemic and share the data with all so we can rapidly evaluate the efficacy of these interventions.”

Luciana Borio, M.D., Assistant Commissioner for Counterterrorism Policy and Director of the Office of Counterterrorism and Emerging Threats at the U.S. Food and Drug Administration (FDA), said that there is an ethical case to be made for conducting a placebo-control trial even in the midst of a major disease outbreak like the Ebola epidemic in western Africa. While some have questioned the ethics of giving a placebo to research subjects at high risk of being exposed to Ebola, Borio said that one could argue that conducting a trial without a placebo control is unethical if it is not going to determine treatment efficacy.

“In the case of Ebola, (such a trial) would be scientifically invalid and a scientifically invalid study by definition cannot be ethical,” she said.

She said that western African countries have been very receptive to clinical trials with a placebo control and that the recent Ebola vaccine trial initiated in Liberia, which includes a placebo, has attracted a large number of volunteers.

“We have taken position that the best way forward is an adaptive randomized control trial,” she said. “We think that is the best way to protect patient safety now. We know that new Ebola outbreaks will occur and now is the time to do this right.”

There are other issues to consider, said Nancy Kass, Sc.D., the Phoebe R. Berman Professor of Bioethics and Public Health in the Department of Health Policy and Management at the Johns Hopkins Bloomberg School of Public Health and Director for Public Health at the Berman Institute of Bioethics.

Kass acknowledged that for a vaccine trial, without a placebo control, “how else can we learn that the vaccines work?” But she said for evaluating treatments, there could be other options.

“Ethics is often about thinking of a creative third option,” she said, “and that often requires getting a lot of people with a lot of different expertise in the same room who can think creatively.”

For example, Kass said that one option could be to hold a small pilot study with 40 patients where all get the treatment to see if the experimental treatment is overwhelmingly effective, a “home-run drug.”

“So if out of 40 people, 38 get up and walk away, you don’t need a placebo,” she said. “But if 38 people did not walk out, you actually have a lot more ethical justification for introducing a placebo.”

Next up: The Commission seeks perspective on the Ebola response from veterans of past fights against infectious disease outbreaks.

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Bioethics Commission Sharpens Focus on Ebola Challenges https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/02/05/bioethics-commission-sharpens-focus-on-ebola-challenges/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/02/05/bioethics-commission-sharpens-focus-on-ebola-challenges/#respond Thu, 05 Feb 2015 14:24:46 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1524 The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) is conducting an in-depth review of U.S. engagement in the global response to the current Ebola epidemic.

In her opening remarks, Amy Gutmann, Ph.D., chair of the Bioethics Commission, noted that the panel is seeking insights into three critical issues: the ethics of placebo-control trials in the context of public health emergencies; the ethics of U.S. public policies that restrict association or movement; and the ethical considerations relevant to collecting and storing biospecimens during a public health emergency and sharing them for future research.

“I believe that the overarching theme of all of these discussions is that major infectious disease epidemics are a matter of U.S. concern for both ethical and prudential reasons,” Gutmann said. “We are obligated to engage in such devastating outbreaks from a global justice perspective, and also—considering the ability of infectious diseases to travel in our interconnected world—it is prudent for us as a country to address epidemics at their source.”

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Bioethics Commission 201: The Functions of a U.S. Bioethics Commission – Advice, Not Enforcement https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/08/07/bioethics-commission-201-the-functions-of-a-u-s-bioethics-commission-advice-not-enforcement/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/08/07/bioethics-commission-201-the-functions-of-a-u-s-bioethics-commission-advice-not-enforcement/#respond Thu, 07 Aug 2014 15:38:17 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1365 The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) advises the President as issues arise from advances in biomedicine and related areas of science and technology. It seeks to identify and promote policies and practices that ensure scientific research, health care delivery, and technological innovation are conducted in a socially and ethically responsible manner. It is a source of expert analysis and advice, but the Bioethics Commission does not make or enforce policies or laws related to bioethics. While the Commission may offer, and has offered, advice to U.S. agencies on how to administer, review, or oversee federal grants, it does not provide or oversee any grants or accompanying program activities or direct funding priorities. Since 2009 the Bioethics Commission has provided guidance based on thorough ethical analysis for topics such as genomics, research with human subjects, incidental and secondary findings, and most recently neuroscience. In addition, the Bioethics Commission is committed to creating educational resources, such as modules and primers, to accompany its reports in order to further support bioethics education.

Its position as a presidential commission is supported by a directive from the President to federal agencies to help the Bioethics Commission as needed. The Executive Order establishing the Commission states: “All executive departments and agencies and all entities within the Executive Office of the President shall provide information and assistance to the Commission as the Chair may request for purposes of carrying out the Commission’s functions, to the extent permitted by law.”

The support of this directive was critical to the Bioethics Commission as it sought to answer President Obama’s question about whether current federal regulations adequately protect participants in federally supported scientific studies (Moral Science: Protecting Participants in Human Subjects Research, 2011). The Commission quickly learned that there is no complete source of basic information, such as level of funding, number of studies or participants, or geographic location, about the government’s research involving human subjects. The Commission therefore requested that information from the 18 agencies that conduct most federal human subjects research. The Commission learned that many federal departments and agencies have no ready means to provide basic information about the research they fund.

As a result, the Bioethics Commission recommended that each department or agency that supports human subjects research should make publicly available a core set of data elements for their human subjects research projects through their own or a trans-agency database system. It also recommended that the Office for Human Research Protections or another designated central organizing agency should support and administer a central web-based portal linking to each departmental or agency system, thus increasing transparency and accountability in human subjects research.

Practical policy recommendations such as these, based on sound ethical principles, are what the Bioethics Commission strives to provide. Its recommendations are informed by empirical and conceptual research, public comment, and public meetings. The Commission is required to hold at least four public meetings a year; these meetings are held in various locations across the nation, and bring Commission Members and subject-matter experts together for presentations and deliberation. These sessions play an integral role in shaping the Bioethics Commission’s reports. Once a consensus among members has been reached, the Commission then publishes its analysis and ultimate recommendations in reports it shares with the President.

The Bioethics Commission is guided by a commitment to critically examine and explore diverse perspectives, and to engage and educate the public on bioethics issues to advance ethically responsible practices and policies. For more information on the Commission visit our website. All meeting webcasts and transcripts, final reports, and related educational materials are publicly available free of charge at www.bioethics.gov. Public meetings are webcast live and archived; the next public meeting will be held on Aug. 20in Washington, D.C.

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Presidential Bioethics Commission 101 https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/07/24/presidential-bioethics-commission-101/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/07/24/presidential-bioethics-commission-101/#respond Thu, 24 Jul 2014 15:30:23 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1360 The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research was formed by Congress and charged with identifying fundamental principles for research involving human volunteers. It completed its work and was ended in 1979. That commission is recognized as the first contemporary U.S. bioethics commission and since its formation, bioethics has had a steady but varied presence within the federal government. For a list of U.S. bioethics commissions visit the history page on bioethics.gov. But what is a U.S. bioethics commission?

First and foremost, the key characteristic of each and every U.S. commission, including the current Presidential Commission for the Study of Bioethical Issues (Bioethics Commission), is that it is term limited. Each commission since 1975 has been independently established by Congress or, more often, by the sitting President. The commissions have been established for different purposes – some to examine single issues, like the Advisory Committee on Human Radiation Experiments and others to advise on bioethics writ large. Each commission has been equipped with its own members, staff, and unique name. As a result, there have been a total of seven federal bioethics commissions over the past 40 years. President Obama first established the current Bioethics Commission on November 24, 2009 with Executive Order 13521. Like all federal advisory bodies, his Bioethics Commission must be renewed every two years.   The Executive Order under which the Commission currently operates expires in September 2015. Even if President Obama extends his order and issues an additional continuance for the Commission, due to the nature of federal bioethics commissions it is expected that the Commission, in its current form, will likely complete its term at the close of President Obama’s second term.

Many other countries have standing bioethics commissions. For example, the Nuffield Council on Bioethics (Nuffield) is a permanent bioethics council based in London. Nuffield is an independent body that was established in 1991 to address concerns over the lack of a bioethical governing body in the U.K. Nuffield operates as a permanent standing council with rotating members; temporary subcommittees are established as needed in order to address specific topics and to allow for the inclusion of subject matter experts. Since its formation, the Nuffield Council has continued to maintain its independence and is considered to be a leading international authority on bioethics policy and debate.

There are advantages and disadvantages to having standing bodies like Nuffield versus temporary commissions like ours here in the United States. Jason Schwartz, a historian of medicine at Princeton University and a former staff member for the current U.S. Bioethics Commission, explains that because each U.S. bioethics commission is established by a presidential administration or Congress, they are able to better reflect the values and priorities of the administrations they serve. Appointed members collectively bring broad expertise to the issues they study, while each commission is able to establish a unique identity and approach, independent of those of its predecessors. However, because each new commission effectively starts ‘from scratch,’ this deliberate absence of continuity and institutional memory can also pose challenges as commissions undertake their work.

Schwartz says that these structural features of U.S. bioethics commissions are particularly apparent when multiple commissions have examined topics of perennial interest and concern, such as how to ensure the protection of participants in human subjects research. Overall, fresh perspectives on enduring questions in bioethics can be of great value, he adds, especially in light of the rapid pace of new developments in science and medicine.

As for this Commission, work continues on Gray Matters, Vol. 2, the second installment in its response to President Obama’s neuroscience related request. Its next public meeting is scheduled for August 20, 2014 and will take place in Washington, D.C.

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Multidisciplinary Members and Staff Reflect the Unique Field of Bioethics https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/07/11/multidisciplinary-members-and-staff-reflect-the-unique-field-of-bioethics/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/07/11/multidisciplinary-members-and-staff-reflect-the-unique-field-of-bioethics/#respond Fri, 11 Jul 2014 14:54:23 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1354 At first glance legal scholars, doctors, philosophers, scientists, and engineers may not appear to have much in common; however, members of these professions make up the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission). For the past four years, since its first public meeting on July 8, 2010, the Bioethics Commission has been advising President Obama on issues arising from advances in biomedicine and related areas of science and technology. Bioethics is a multidisciplinary field that draws upon many subject areas and disciplines to address ethical questions in health care and biomedical sciences. The field revolves around core principles such as justice, beneficence, autonomy, and democratic deliberation. Different disciplinary perspectives lend various lenses through which to consider these principles, contributing to the richness of the field as a whole and increasing the likelihood that the ethical analysis generated is well-rounded.

Reflecting the multidisciplinary nature of bioethics, Bioethics Commission members include philosophers John Arras, Ph.D., and Christine Grady, R.N., Ph.D.; legal scholars Anita Allen, J.D., Ph.D., and Nita Farahany, J.D., Ph.D.; clinician Barbara Atkinson, M.D.; scientific researcher Raju Kucherlapati, Ph.D.; clinician and philosopher Daniel Sulmasy, M.D., Ph.D.; along with Nelson Michael, M.D., Ph.D., and Stephen Hauser, M.D., who are both clinicians and researchers; Vice-chair James W. Wagner, Ph.D., an engineer; and Commission Chair Amy Gutmann, Ph.D., a political philosopher. Our Member Spotlight series provides an in-depth look at each member of the Commission, highlighting how their professional backgrounds contribute to the commission’s bioethical work, and our video, What a Bioethics Commission Does,further illustrates the interdisciplinary nature of the field.

Just as the variety of the Bioethics Commission members’ backgrounds fosters rich dialogue and collaboration, so too does the multidisciplinary nature of the Commission’s staff, who assist members with research, drafting reports, and planning public meetings. The Commission staff come from law, epidemiology, philosophy, medical anthropology, health sciences, and public health. This diversity in expertise is intentional and helps the Commission tackle the wide variety of issues bioethics addresses. Already the Commission has covered a range of issues including the ethical considerations arising from emerging technologies—such as synthetic biology, whole genome sequencing, and neuroscience—and the protection of scientific research participants. More specifically the Commission has addressed questions such as: should the government conduct pediatric medical countermeasure research; and how should researchers and clinicians prepare for incidental and secondary findings?

Bioethics often examines questions to which there are no easy answers. Commission Members, representing a variety of professional backgrounds, bring a range of legal, moral, scientific, and political perspectives to the issues it considers. With help from a multidisciplinary staff the Bioethics Commission provides well thought out ethical analyses about complex issues.

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Beyond BRAIN: Bioethics Commission to Look Broadly at Ethical Issues in Neuroscience https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/12/18/beyond-brain-bioethics-commission-to-look-broadly-at-ethical-issues-in-neuroscience/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/12/18/beyond-brain-bioethics-commission-to-look-broadly-at-ethical-issues-in-neuroscience/#respond Wed, 18 Dec 2013 14:15:37 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1052 On July 1, 2013, President Obama requested that the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) review the ethical considerations of neuroscience research and its application. The impetus for this request was the launch of the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative.

Dr. Amy Gutmann, the President of the University of Pennsylvania and the Chair of the Bioethics Commission, opened today’s meeting, the fifteenth public meeting of the Bioethics Commission with a clarifying note: that the deliberations of the Bioethics Commission will go beyond the scope of the BRAIN Initiative alone. “While we received our charge as part of the President’s BRAIN Initiative, our focus is wider than the Initiative…President Obama asked us to review the ethical consideration of neuroscience more broadly,” she said, “[including] considerations of both neuroscience research and the application of neuroscience research findings.”

Dr. Gutmann explained that the Bioethics Commission is not tasked with the review of institutional research protocols. As such, the Bioethics Commission will “consider how best to integrate ethics into neuroscience broadly – and the BRAIN Initiative specifically– but this Bioethics Commission will not be the ultimate locus of that integration.”

Over the coming months, the Bioethics Commission will review different ethical issues associated with neuroscience research and how ethics might be integrated into neuroscience training and practice. The Bioethics Commission will then, Gutmann said, “make ethical and practical recommendations that will inform the conduct of the BRAIN Initiative.”

Today’s meeting will build upon previous discussion of the ethical issues related to neuroscience. The Bioethics Commission will hear from experts on how to integrate ethics into every step of neuroscientific training and practice. They will also discuss the topic of  private sector partners in the BRAIN Initiative, to understand how they go about identifying and addressing ethical issues. Finally the Bioethics Commission will hear from international neuroscience research initiatives, to hear how groups already pursuing large neuroscience research projects are dealing with ethical issues in their work.

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