President Obama – 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 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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Bioethics Commission Participates in White House BRAIN Conference https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/10/01/bioethics-commission-participates-in-white-house-brain-conference/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/10/01/bioethics-commission-participates-in-white-house-brain-conference/#respond Wed, 01 Oct 2014 16:30:59 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1435 At the White House BRAIN Conference yesterday, Lisa M. Lee, Executive Director of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) joined other representatives from federal agencies to discuss the progress and the goals of the BRAIN Initiative.  Her remarks, as part of the panel “Current Activities, Long-Term Goals, and Critical Components for Success,” follow.

Dr. Holdren, colleagues, honored guests:

Thank you for the opportunity to update you on the Bioethics Commission’s progress and role related to this White House Grand Challenge.

We all know that advances in biomedicine, science, and technology come with a range of ethical considerations.

The Bioethics Commission is an independent advisory panel comprising a variety of disciplines including law, philosophy, medicine, science, and engineering. We seek to identify policies and practices that will ensure that scientific research, health care delivery, and technological innovation are conducted in a socially and ethically responsible manner.

So, we were delighted last year when President Obama asked us to review the ethical considerations associated with neuroscience research as part of the BRAIN Initiative.

Earlier this year, we released the first of two reports in response to his charge. That report: Gray Matters: Integrative Approaches for Neuroscience, Ethics, and Society. We’ve heard that word a lot today—”integrative”—and that’s my message here.

In Gray Matters the Commission called for adequate and clearly demarcated funding to achieve its recommendation of integrating ethics explicitly and systematically throughout neuroscience research.

Such integration allows us to incorporate ethical insights into the scientific process and to consider societal implications of neuroscience research from the very beginning.

Ethics integration – early and throughout research – can prevent the need for corrective interventions, and help build public trust in science. Integration prevents intervention.

We have collected public comments from professional organizations, affected communities and individuals and have engaged with the scientific community, all of whom bring to bear a variety of important perspectives on contemporary neuroscience.

We heard from many, including the Salk Institute, the Allen Institute, and the Kavli Foundation, and others.

In our first report, we actually recommended that BRAIN Initiative-related scientific advisory bodies include substantive participation by persons with relevant expertise in the ethical and societal implications of the neuroscience under consideration.

The Commission did not recommend a single model of integration – there are many good options and we reported on several of these. We did highlight DARPA’s exemplary work in this area. DARPA successfully combines several approaches to ethics integration including

  • Consulting with an independent panel of ethics experts,
  • Linking program managers with ethics mentors, and
  • Setting aside funds for ethics consultation.

In short – good science is ethical science. We point to DARPA’s example because we are keenly aware that ethics recommendations can be interpreted as just one more bureaucratic hurdle in the way of scientific discovery.

Clearly, DARPA’s integrated model has not hampered its progress or broken its bank.

Our commission works diligently to make practical recommendations— recommendations that both de-mystify ethics and facilitate good science. We know that so much can be gained from neuroscience research. And I think we all agree that we must ensure it does not come to a screeching halt because of one significant ethical lapse.

Thinking about these issues now and implementing our recommendations in a way that is compatible with your institution or agency can prevent that from happening.

Next, the Bioethics Commission is considering the implications of neuroscience research and its applications more broadly for our second report. We’re thinking about:

  • The ethical issues raised across stages of life – from infancy through old age,
  • And what neuroscience research might mean for various affected communities like those affected by Alzheimer’s disease, Parkinson’s disease, and mental illness.

These types of community engagement play a key role in our deliberations We expect to hold at least one additional public meeting – in November – before concluding our deliberations and making a final set of recommendations.

Since by now you’ve no doubt picked up our theme, that ethics integration – early and throughout research – prevents intervention, I will close simply by saying that, on behalf of the 11 Members of the Bioethics Commission, we are delighted to be a part of this initiative – from its very beginning.

Thank you.

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Neuroscience and Ethics: Integration Not Intervention https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/09/30/neuroscience-and-ethics-integration-not-intervention-2/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/09/30/neuroscience-and-ethics-integration-not-intervention-2/#respond Tue, 30 Sep 2014 19:35:22 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1431 We’re pleased to take part in today’s White House BRAIN Conference. Check out our infographic that highlights our recommendations from Gray Matters: Integrative Approaches for Neuroscience, Ethics, and Society, the first of two reports on neuroscience and related ethical issues.

bioethics_integration

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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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Live from Washington, D.C. https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/12/18/live-from-washington-d-c-2/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/12/18/live-from-washington-d-c-2/#respond Wed, 18 Dec 2013 14:00:17 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1050 Welcome to the live blog for the fifteenth public meeting of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission). The Bioethics Commission is meeting in Washington, D.C. today, December 18, 2013, from 9 a.m. to 5 p.m., ET.

Today, the Bioethics Commission will continue its discussion of neuroscience and related ethical issues. As part of the new Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative announced in April, President Obama has asked the Bioethics Commission to play a critical role in ensuring that neuroscientific investigational methods, technologies, and protocols are consistent with sound ethical principles and practices, both within the BRAIN Initiative and within neuroscience more broadly. The Bioethics Commission began its discussion and consideration of ethical issues related to neuroscience at the fourteenth public meeting, on August 18 and 19, 2013, in Philadelphia, P.A.

You can follow the proceedings of the Bioethics Commission’s meeting here at this blog, or on the live webcast at the Bioethics Commission’s website. All transcripts and webcasts will be archived and available following the meeting.

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The Role of the Bioethics Commission as it Examines the Field of Neuroscience https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/12/17/the-role-of-the-bioethics-commission-as-it-examines-the-field-of-neuroscience/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/12/17/the-role-of-the-bioethics-commission-as-it-examines-the-field-of-neuroscience/#respond Tue, 17 Dec 2013 15:00:40 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1045 On December 18, 2013, the Presidential Commission for the Study of Bioethical Issues (the Bioethics Commission) will hold a public meeting to discuss neuroscience and related ethical issues.

In July 2013, as part of the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative, President Obama charged the Bioethics Commission to review and make recommendations on ethical standards to guide the field of neuroscience. Specifically, President Obama requested that the Bioethics Commission “identify proactively a set of core ethical standards – both to guide neuroscience research and to address some of the ethical dilemmas that may be raised by the application of neuroscience research findings.”

While President Obama gave the current charge to the Bioethics Commission as part of the BRAIN Initiative, the Bioethics Commission’s work on this project will consider neuroscience more broadly. President Obama asked the Commission to review the ethical considerations of neuroscience as part of the BRAIN Initiative, but also to address the considerations of both neuroscience research and the application of neuroscience research findings.

In the Executive Order that established the Bioethics Commission in 2009, President Obama brought together this body of experts to advise him “on bioethical issues that may emerge as a consequence of advances in biomedicine and related areas of science and technology.” The advisory role played by the Bioethics Commission intends that it will not directly oversee any individual research protocols. Instead, the Bioethics Commission, as it has approached previous projects, will work to “identify and examine specific bioethical, legal, and social issues related to the potential impacts of advances in biomedical and behavioral research.” This is particularly important to neuroscience because of the quick moving nature of this emerging field. The current charge from President Obama asks the Bioethics Commission to turn its attention to how to successfully integrate ethics into the field of neuroscience.

Over several public meetings, the Bioethics Commission will consider current and future advances in neuroscience, including neuroscientific training, investigational methods, and neuroscience technologies, and discuss potential ways to integrate ethical principles into neuroscience research in a foundational manner. Based on this review, the Bioethics Commission will make recommendations for how to address some of the ethical dimensions associated with neuroscience research and its application.

The Bioethics Commission began this review at a public meeting last August when it heard from experts describing the most recent innovations at the forefront of neuroscience research. The Commission also began to consider the potential ethical issues associated with neuroscience research, hearing from David Chalmers, Ph.D., Professor of Philosophy and Co-Director of the Center for Mind, Brain, and Consciousness at New York University and Distinguished Professor of Philosophy and Director of the Centre for Consciousness at Australian National University, as he discussed whether advances from the BRAIN Initiative might help us to “better understand who we are.” Experts from the National Institutes of Health, National Science Foundation, and the Defense Advanced Research Projects Agency discussed the ethical challenges that arise in neuroscience research. The Bioethics Commission also heard from Deborah Johnson, Ph.D., M.Phil., M.A., Anne Shirley Carter Olsson Professor of Applied Ethics, of the Science, Technology, and Society Program in the Department of Engineering and Society at the University of Virginia; Thomas Murray, Ph.D., President Emeritus of the Hastings Center; and Anjan Chatterjee, M.D., F.A.A.N., Professor of Neurology at the Center for Cognitive Neuroscience and Center for Functional Neuroimaging at the University of Pennsylvania School of Medicine, as they spoke on different models that might allow for the integration of ethics into neuroscience.

The upcoming public meeting will continue these discussions, focusing on models to integrate ethics into the foundations of neuroscience training, considering how the neuroscience private sector identifies and addresses ethical issues in neuroscience research, and looking into international perspective on addressing ethical issues in neuroscience.

 

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