Bethany Brookshire – 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 Discussion Highlights on Ethical Issues Related to Neuroscience https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/12/18/discussion-highlights-on-ethical-issues-related-to-neuroscience/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/12/18/discussion-highlights-on-ethical-issues-related-to-neuroscience/#respond Wed, 18 Dec 2013 21:48:47 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1072 In a roundtable discussion that ended today’s meeting, Amy Gutmann, Ph.D., President of the University of Pennsylvania and the Chair of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission), emphasized that “we have two big buckets here, one is the ethics of neuroscience research, and the other is the potential applications and ethical implications of the research findings themselves.” She asked each of the meeting presenters for their advice on what the Bioethics Commission should recommend as it examines the ethical issues related to neuroscience.

“I’d like to recommend that there be serious financing incentives and accountability to develop ethics scholarship in neuroscience, and to do it in a way that is very mindful…so the scholarship is structured in a way so that it itself is educational.”  – Mildred Z. Solomon, Ed.D. President of the Hastings Center

“[Bioethics] is the only field where everyone seems to think they are qualified…because everyone believes they are ethical…and they believe that’s all that’s needed.” – Paul Root Wolpe, Ph.D. of Emory University

“As a working scientist, there is already a very large regulatory burden on us, and we now in the case of my institution have several people who are full time doing nothing but the paperwork associated with any one experiment. And I would urge you, if you make recommendations, to give some thought to…the regulatory burden.” – Christof Koch, Ph.D. of the Allen Institute for Brain Science

Bioethics Commission members responded:

“I think it’s really important to recognize that ethical considerations do not equate to regulatory burdens.” – Amy Gutmann, Ph.D. President of the University of Pennsylvania and the Chair of the Bioethics Commission

“We know there are scientists that will be ethical failures…How do we prepare for [ethical failure]…how do we disincentivize it? What sort of sanctions should be in place? What sort of protections for research subjects…should be in place? We can’t pretend like it’s not going to happen; it’s going to happen. What do we do about that?” – Anita L. Allen, J.D., Ph.D. Vice Provost for Faculty at the University of Pennsylvania and the Henry R. Silverman Professor of Law and Professor of Philosophy and a member of the Bioethics Commission

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Neuroscience: What’s Going On Around the Globe? https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/12/18/neuroscience-whats-going-on-around-the-globe/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/12/18/neuroscience-whats-going-on-around-the-globe/#respond Wed, 18 Dec 2013 21:13:46 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1069 At today’s meeting examining the ethical issues surrounding neuroscience research and neuroscientific advances, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) turned its attention to neuroscience and bioethical initiatives taking place around the world.

Nikolas Rose, Ph.D. is a member of the European Union’s Human Brain Project’s Social and Ethical Division Steering Committee. He said the Project aims to “simulate the human brain, cell by cell, in a neuromorphic supercomputer.” He told the Bioethics Commission that bioethics has been a central tenet in the Project since its beginning, with funding devoted to social and ethical programs. One of the central themes, Dr. Rose said, was “the idea of responsible research and innovation.”

He emphasized five streams of the E.U.’s Human Brain Project:

  • First, a foresight lab to anticipate neuroscientific developments and work out scenarios of what would happen if certain developments came to fruition.
  • Second, a conceptual and philosophical analysis of what a simulation of the human brain would entail.
  • Third, a public dialogue with stakeholders. “Everything suggests that the more open, transparent, and dialogic the researchers are,” Dr. Rose said, “…the better it should be.”
  • Fourth, the Human Brain Project encourages ethical reflection among the researchers.
  • Finally, the Human Brain Project is concerned with governance and regulation of the Project as it moves forward.

Jonathan Montgomery, LL.M., Chair of the Nuffield Council on Bioethics spoke about a recent Nuffield Report on Bioethics, which made recommendations relevant to neuroscience. He said that the Council was able to identify three main virtues: inventiveness, humility, and responsibility. Within these tenets, the Council addressed a series of ethical challenges, including investigations into hype and research culture; engaging younger students in bioethical thinking; registries and data collection; and working with ethics research panels on difficult issues such as sham surgery.

The Bioethics Commission also heard from Stefano Simplici, Ph.D., of the International Bioethics Committee, United Nations Educational, Scientific, and Cultural Organization about the issues of discrimination and stigma in bioethics. Dr. Simplici emphasized that “the lottery of social and biological life should not be grounds for disadvantages or advantages.” He expressed concerns about advances in neuroscience that might affect criminal law, in particular the concept of “mens rea,” or guilty mind, the idea of criminal intent.

The Human Brain Project’s Dr. Rose responded to Dr. Simplici’s concern: “A lot of what happens in new and emerging technologies, especially from the ethical point of view,” he said, “is highly speculative and overestimates what the neuroscience can actually do.”

The Bioethics Commission will take this international work into account as it considers how best to integrate ethics into neuroscience research.

 

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How Some Private Sector Representatives Address Ethical Issues https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/12/18/how-some-private-sector-representatives-address-ethical-issues/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/12/18/how-some-private-sector-representatives-address-ethical-issues/#respond Wed, 18 Dec 2013 19:55:18 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1063 The second session in today’s meeting of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) brought together representatives from the private sector to discuss how they identify and address ethical issues in neuroscience research.  The question before the panel: ‘How does your institute currently address ethical issues related to neuroscience research?’

Terrence J. Sejnowski, Ph.D. of the Salk Institute of Biological Sciences, noted that working with a group of human patients changed how he thought of the ethical issues surrounding neuroscience research. “Somehow when you start tinkering with the brain,” he said, “people get more concerned because it’s tinkering with who you are.” It is not like other biomedical research, he said. For example, Dr. Sejnowski said, “The liver can’t think, or if it does, it doesn’t talk.” He noted that now is “the right time to start thinking about this.”

Christof Koch, Ph.D. of the Allen Institute for Brain Science also expressed a sense of ethical responsibility. “Your active brain is who you are,” he said. “We have responsibility to our own science directly, a responsibility to our field, and to society at large.” When asked directly about whether ethical issues have affected how the Allen Institute conducts its research, Dr. Koch noted that due to ethical concerns regarding privacy, the Allen Institute has not put the genomic sequencing information online for its human brain maps. He recognized that the ethical issues absolutely have to be clarified. Dr. Koch spoke of new work that produces ‘organoids’ in a petri dish. The layers of cells show organization and some show electrical activity. The ethical implications of this work needs to be understood, Dr. Koch said, because neuroscience advances may mean that “we need to begin to think about sentience in a dish.”

Anita L. Allen, J.D., Ph.D. Vice Provost for Faculty at the University of Pennsylvania and the Henry R. Silverman Professor of Law and Professor of Philosophy and a member of the Bioethics Commission noted, “we care about controlling or interfering with the brain because it is the substrate of the mind.“ Today’s discussions on addressing and identifying ethical issues in neuroscience, will inform the Bioethics Commission as it moves forward with the request from President Obama related to the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative.

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Integrating Ethics and Neuroscience Through Education https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/12/18/integrating-ethics-and-neuroscience-through-education/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/12/18/integrating-ethics-and-neuroscience-through-education/#respond Wed, 18 Dec 2013 17:13:56 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1056 Today’s meeting of The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) began with a session on how ethics are integrated into science education in general, and into neuroscience education in particular.

The Commission members heard first from Mildred Z. Solomon, Ed.D. President of the Hastings Center. Dr. Solomon emphasized that scientists are professionals, and that as such, they should “consider the purposes and implications of their work.”

Science and technology hold great power in our society, Dr. Solomon said, and therefore “self-reflection is important.” She noted that scientists, as experts, are best positioned to constrain the hyperbole that can arise from the misinterpretation of neuroscience findings, but also pointed out that bioethicists and scientists need one another: Ethicists might miss problems or estimate incorrectly the magnitude of ethical issues. On the other side, scientists cannot engage closely with ethicists unless they “develop the ability to discriminate between ethical and normative questions.”

Dr. Solomon proposed a model of “transformational learning,” the type of shared learning experience that is “something you do for yourself,” with basic bioethics literacy for early researchers and undergraduates and deeper engagement for professionals. She proposed actions including an Ethical, Legal and Social Implications (ESLI) program for brain science, such as that associated with the Human Genome Project; a learning community approach to bioethics; annual symposia on bioethics; bioethics intensives for neuroscientists; surveys that can be utilized to examine the efficacy of bioethical education; and for BRAIN awardee institutions to build the capacity to address ethical questions into their grant work.

Steven E. Hyman, M.D., of the Broad Institute of Massachusetts Institute of Technology and Harvard University, spoke to the Bioethics Commission about the importance of encouraging young neuroscience students to think about “the purpose of their work in the deepest sense.” He commented that the young scientists he works with “are so deeply engaged in the intellectual and technological aspects of their work that often they do not find themselves able to lift their heads to engage in ethical reflections.” By engaging students with ethical questions early in their scientific careers, Dr.  Hyman proposed a goal of achieving “curiosity about ethics concerns, and habits of ethical reflection.”

The next speaker before the Bioethics Commission was Pat Levitt, Ph.D. of the  University of Southern California. Dr. Levitt noted that “people come to the table with a belief system, and we have to recognize that as scientists.” He stated three main areas that he feels “demand greater emphasis in ethics training:”

First, the challenge of “conveying promises of neuroscience discoveries leading to disease and disorder cures.” Neuroscience holds a special place, he said, because “we believe that through our capacity to gather an unending amount of information, we eventually will discover the signature patterns of mental and physical states.” Second, Dr. Levitt stated that the current emphasis on translational technologies might have led to “misrepresenting research ‘deliverables’ to trumpet discoveries that provide high science currency.” Finally, Dr. Levitt notes that neuroscience advances have led to evolution in the concept that human brain disease results from a developmental etiology. He concluded, “it is about training the current and next generation to recognize when they are participating in building a bridge too far, which is an issue of personal and disciplinary ethics, and when they are being true to both the promises and limitations of neuroscience.

The final speaker was Paul Root Wolpe, Ph.D. of Emory University. He noted that the bioethical issues inherent in neuroscience are more personal than those in other research areas. “I don’t care if you have my genome,” he said. “It isn’t the genome that most defines who I am. The sense of myself, my memories, my personality, my quirks…reside in my brain, not in my genome.”

Neuroscience has been experimenting in areas that have profound ethical implications.  “I keep thinking we’re going to hit a wall,” Dr. Wolpe said, “and be able to go no further, and neuroscience keeps pushing through that wall.” Because of this, Dr. Wolpe said, now is the time to think about the implications of neuroscientific advances. He recommended three courses of action: a re-prioritization so that there is funding to systemically consider ethical issues in neuroscience, encouraging a different orientation for graduate students to address ethical issues in neuroscience, and encouraging scientists to speak publicly about their research topics. “They are the ones,” Dr. Wolpe said, “who not only have the expertise, but who have a right to advocate for the science itself.”

In the discussion that followed, Amy Gutmann, Ph.D., President of the University of Pennsylvania and the Chair of the Bioethics Commission, pointed out, “you can’t begin ethics education at the professional level.” She emphasized that “science is a professional and a public calling,” and this makes it important to engage students in bioethical discussions early in their careers. Bioethical education is, she said, “going to be more effective and more stimulating if it’s taught to undergraduates who are less jaded than professionals.”

Overall, the session speakers emphasized the need for deep consideration of ethical issues in neuroscience. They stressed the importance of early education on bioethical issues to spark curiosity and to encourage deep thinking, without creating the perception that bioethical considerations could unduly fetter scientific pursuits. These points will help guide the Bioethics Commission as it considers the ethical issues inherent in neuroscience research and neuroscientific training.

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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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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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Pedagogical Materials in Support of Bioethics Education https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/09/30/pedagogical-materials-in-support-of-bioethics-education/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/09/30/pedagogical-materials-in-support-of-bioethics-education/#respond Mon, 30 Sep 2013 18:03:12 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=963 The Presidential Commission for the Study of Bioethical Issues (the Bioethics Commission) is pleased to announce the release of new pedagogical materials for bioethics education. An essay introducing the Bioethics Commission’s new materials and outlining the Commission’s commitment to bioethics education is featured in the newly published September-October 2013 issue of the Hastings Center Report.

The new materials comprise two sets of modules—one on informed consent and one on community engagement—that integrate content across the Bioethics Commission’s many reports. The modules are designed to support teaching of bioethics ideas, principles, and theories, with a focus on skill building, decision making, and incorporation of an ethical perspective into daily work. The modular format means they can be easily integrated into existing or standalone curricula in traditional and nontraditional educational settings, such as the classroom, the workplace, or Institutional Review Board training sessions.

Throughout its tenure, the Bioethics Commission has made repeated recommendations that bioethics education be made more readily available to a wider variety of disciplines at the undergraduate, graduate, and professional level (see Table).

At the most recent meeting of the Bioethics Commission in Philadelphia, Pa. (August 19-20, 2013), Amy Gutmann, Ph.D., Chair of the Bioethics Commission, and President of the University of Pennsylvania, heralded the release of the pedagogical materials: “One of our primary goals in these deliberations and our reports is to generate and promote practices of pedagogy in ethical conduct of research, innovation [and] health care delivery.”

The pedagogical materials are not intended to provide a comprehensive bioethics curriculum, but the Bioethics Commission hopes that, by providing instructors with contemporary examples of real-life ethical challenges addressed by a presidential commission, it can help advance its recommendations for ethics education improvements.

Watch the video Promoting and Providing Materials for Bioethics Education to learn more about the Bioethics Commission’s vision for bioethics education.

The new topic-oriented modules complement the Bioethics Commission’s report-specific educational materials, including A Study Guide to “Ethically Impossible” STD Research in Guatemala from 1946 to 1948, which was released in November 2011, and source data available for study of government supported research involving human participants.

The Bioethics Commission held a webinar on September 19, 2013 to introduce and review the pedagogical materials.  The webinar, Advancing Bioethics Education, can be viewed here.

All Bioethics Commission pedagogical materials are freely available at www.bioethics.gov. The Bioethics Commission encourages feedback on the materials at education@bioethics.gov.

Table: Ethics education and researcher responsibility recommendations made by the U.S. Presidential Commission for the Study of Bioethical Issues, 2010-2012.

 

Recommendation Report Title Date
Recommendation 9:  Ethics EducationBecause synthetic biology and related research cross traditional disciplinary boundaries, ethics education similar or superior to the training required today in the medical and clinical research communities should be developed and required for all researchers and student-investigators outside the medical setting, including in engineering and materials science.  As part of the coordinated approach urged in Recommendation 4, the Executive Office of the President, in consultation with the National Academy of Sciences, the National Academy of Engineering, the scientific community, and the public, should convene a panel to consider appropriate and meaningful training requirements and models.  New Directions: The Ethics of Synthetic Biology and Emerging Technologies December 2010
Recommendation 6:  Amend the Common Rule to Address Investigator ResponsibilitiesThe Common Rule should be revised to include a section directly addressing the responsibilities of investigators.  Doing so would bring it into harmony with the Food and Drug Administration regulations for clinical research and international standards that make the obligations of individual researchers more explicit, and contribute to building a stronger culture of responsibility among researchers. Moral Science:  Protecting Participants in Human Subjects Research December 2011
Recommendation 7:  Expand Ethics Discourse and EducationTo ensure the ethical design and conduct of human subjects research, universities, professional societies, licensing bodies, and journals should adopt more effective ways of integrating a lively understanding of personal responsibility into professional research practice.  Rigorous courses in bioethics and human subjects research at the undergraduate as well as graduate and professional levels should be developed and expanded to include ongoing engagement and case reviews for investigators at all levels of experience. Moral Science:  Protecting Participants in Human Subjects Research December 2011
Recommendation 2.1Funders of whole genome sequencing research; managers of research, clinical, and commercial databases; and policy makers should ensure the security of whole genome sequence data.  All persons who work with whole genome sequence data, whether in clinical or research settings, public or private, must be: 1) guided by professional ethical standards related to the privacy and confidentiality of whole genome sequence data and not intentionally, recklessly, or negligently access or misuse these data; and 2) held accountable to state and federal laws and regulations that require specific remedial or penal measures in the case of lapses in whole genome sequence data security, such as breaches due to the loss of portable data storage devices or hacking.  Privacy and Progress in Whole Genome Sequencing October 2012

 

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Discussion Highlights on Neuroscience and Related Ethical Issues https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/08/20/discussion-highlights-on-neuroscience-and-related-ethical-issues/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/08/20/discussion-highlights-on-neuroscience-and-related-ethical-issues/#respond Tue, 20 Aug 2013 17:30:38 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=883 In a roundtable discussion, the Presidential Commission for the Study of Bioethical Issues (the Bioethics Commission) today discussed the ethical issues related to neuroscience research, as a part of the BRAIN (Brain Research through Advancing Innovative Neurotechnologies) Initiative. Discussion highlights included:

“Neuroscience and brain studies in particular bring us closer to the question of who we are and how we function…we should applaud the fact that it is understood that, in the foundation of a new initiative like this, ethics is expected to guide the research…we have a chance in what we do today to ensure that no one will look back and wonder ‘what were we thinking?’” – James W. Wagner, Bioethics Commission Vice Chair, President of Emory University.

“People who are developing the technologies are not thinking of ethics, they are engineers…” – Henry S. Richardson, J.D., M.P.P., Ph.D., Professor, Senior Research Scholar, Kennedy Institute of Ethics at Georgetown University.

“We would argue that to be a real scientist and a real engineer you must also think ethically” – Amy Gutmann, Ph.D., Chair of the Bioethics Commission, President of the University of Pennsylvania.

“I do worry a lot about neurohype” – Nita Farahany, J.D., Ph.D., Director of Science and Society at the Institute for Genome Sciences & Policy, Professor of Law and Philosophy, and Professor of Genome Sciences and Policy at Duke University.

“We need to find ways to engage with social media and educate the public…[ways] that we did not have when the genome ELSI [Ethical, Legal and Social Implications] program began…It’s probably going to require a 20 year old to figure out how to do it.” -Thomas Murray, Ph.D., Professor Emeritus of the Hastings Center

“Working scientists and clinicians need to engage with the public directly, and at this point, there is no incentive to do so” – 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 we think about this…if we all truly believe that the way to accomplish this goal is to educate everyone and think about these ethical issues right from the beginning, we need to think about ways that, from the beginning of this effort, we can bring people together…how do we do that? That is the question.” – Raju Kucherlapati, Ph.D., Paul C. Cabot Professor in the Harvard Medical School Department of Genetics and Professor in the Department of Medicine at Brigham and Women’s Hospital.

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Laying an Ethical Foundation for the BRAIN Initiative https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/08/20/laying-an-ethical-foundation-for-the-brain-initiative/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/08/20/laying-an-ethical-foundation-for-the-brain-initiative/#respond Tue, 20 Aug 2013 17:19:36 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=899 In the final session of today’s meeting of the Presidential Commission for the Study of Bioethical Issues (the Bioethics Commission), Commission members 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., Professor 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.

The three speakers brought up different models for integrating ethics and science in a foundational manner as the Bioethics Commission considers neuroscience and related ethical issues as a part of the BRAIN (Brain Research through Advancing Innovative Neurotechnologies) Initiative.

Johnson emphasized the importance of working together with those conducting the research as it is designed and goes forward. “If what you want is a group of people who keep alive the issues and write about them and think and develop expertise in ‘neuroethics’ that’s one thing, but if what you want to do is sort of impact the [BRAIN] Initiative, you have to get inside,” she said. “You have to have people who aren’t in an enclave of expertise…you have to get in there with them.”

Murray brought his experiences with the Human Genome Project to inform how the Bioethics Commission might approach the ethical issues related to neuroscience research as the BRAIN Initiative goes forward. He emphasized the three kinds of ethical models used during the pursuit of the Human Genome Project:

  1. 1. Ethics performed after the planning and initiation of research. “Think of people who do ethics as the fellow in the parade who follows behind the elephant and cleans up. We’d like to at least walk alongside the elephant,” said Murray.
  2. 2. Ethics performed immediately prior to the initiation of research. “If you know the sport of curling,” said Murray, “The [ethicist is the] person who sweeps in front to make sure the puck goes where you want it to go.”
  3. 3. Putting an ethical framework in place before the planning of research begins, the model which Murray himself prefers: “Figuring out when your community is falling short of its own values, and telling them that,” he said.

He also spoke of his experiences as a member of the Ethical, Legal and Social Implications (ESLI) group during the Human Genome Project, and the difficulties the group encountered as they attempted to address ethical issues. He noted that the chief criticism the ESLI group faced was that it was insufficiently effective in policy issues, saying that “you need many voices and many venues if you want to stay engaged with controversial issues.”

Chaterjee spoke of the current ethical challenges facing neuroscience, and the importance of developing ethical frameworks and educating the public as the BRAIN Initiative goes forward.

He pointed out that neuroscience is “being sold right now,” including products such as ‘brain games,’ which are plausible, but have little evidence to support their efficacy, and the flawed logic of using neuroimaging technologies to diagnose psychological and psychiatric illness.

He also noted the presence of new ‘wearable technology’ developed for cognitive enhancement, which is already being developed and sold as neuroscience is translated into cultural norms.

Ethical issues arise from these developments and others, in the form of safety, justice, fairness, character (for example, undermining the link between effort and achievement), and autonomy, said Chaterjee. “What, if anything should we do about this?” he said.

Chaterjee also emphasized the need for education. There is now greater access to ethical education for scientists and medical students, but he notes, it is still “very clunky.”

“We do not think of ethical deliberation as a core competency for what it means to be a scientist and what it means to be a clinician,” he said. This is an important issue to address when thinking of the development of neuroscience technologies and their related ethical concerns, according to Chaterjee.

Chaterjee also anticipated another ethical issue that could arise as neurotechnologies develop: that of intellectual property and commercialization.

Together, the speakers emphasized the need for addressing ethical issues and promoting an ethical framework as a project is designed—to build scientific questions on a strong ethical foundation. They also called for communication and education to be addressed in addition to the ethical issues related to neuroscience as the BRAIN Initiative advances.

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