Mary Darby – 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 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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Bioethics Education from Three Viewpoints https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/05/27/bioethics-education-three-view-points/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/05/27/bioethics-education-three-view-points/#respond Wed, 27 May 2015 19:11:17 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1643 This afternoon, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) turned its attention to three approaches for teaching bioethics.

Emphasis on Empirical Methods

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, made the case for including empirical scholarship in the education of bioethicists. He identified two broad roles for empiricism in bioethics: to inform ethical analysis and to move from a moral vision to ethical behavior and effective, justifiable policy.

“High-quality, high-impact bioethics requires interdisciplinarity, translation to policy and practice, and grounding in nuanced appreciation of relevant empirical realities,” Joffe said.

Teaching Bioethics through Humanities

Margaret Little, Ph.D., is the director of the Kennedy Institute of Ethics and associate professor in the philosophy department at Georgetown University. Little described how novel approaches to bioethics education, such as the Kennedy Institute’s Conversations in Bioethics series, Massive Open Online Courses (MOOCs), and its Ethics Lab, can help prepare students and the broader public to engage in dialogue and deliberation on topics in bioethics with significant public policy implications.

Each of these approaches has unique advantages. Through the university-wide conversations series, for example, students can gain exposure to experts with both deep knowledge and unique personal experience. Through MOOCs, “anyone with an internet connection can access the world’s experts on a variety of topics,” Little noted. And in the Ethics Lab, students use newly acquired knowledge to design real-world tools and interventions.

Bioethics Education through a Clinical Lens

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, explored the value of nursing to public discourse on ethical issues, the ethical issues that nurses encounter that require bioethics education, and the role of bioethics education in preparing the next generation of nursing professionals.

Ulrich said that nurses face complex and challenging ethical issues in clinical care, partly because of the time they spend directly with patients and their families. Yet only about half of nurses surveyed reported having had ethics education in their basic or advanced professional program, and 23 percent said they’d had no ethics education at all. This lack of preparedness can make nurses feel less confident and less likely to take action when faced with an ethical issue.

“Ethics preparedness can strengthen nurses’ ability to work collaboratively with other health care providers, build confidence to speak about ethics concerns related to patient care, and garner respect as valued members of the caregiving team,” Ulrich said.

Next, the Bioethics Commission will wrap up today’s meeting with a roundtable discussion.

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How to Elevate Bioethics Deliberations to a National Level https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/05/27/how-elevate-bioethics-deliberations-national-level/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/05/27/how-elevate-bioethics-deliberations-national-level/#respond Wed, 27 May 2015 17:32:16 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1641 The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) continued its discussion about democratic deliberation in bioethics and turned its attention to how bioethics issues are treated in the national dialogue, and the role of national bodies like the Bioethics Commission in fostering democratic deliberation on bioethics. The Bioethics Commission heard from 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, and Jason Schwartz, Ph.D., M. Bioethics, the Harold T. Shapiro Fellow in Bioethics at the University Center for Human Values, Princeton University.

Davis noted that during his three-year tenure as director of a national bioethics advisory body, he never heard the term “democratic deliberation.” But he believes that active citizen participation in bioethics issues is important and should be encouraged. At Geisinger, he said, he has been involved in several efforts to engage patients and elicit their views on research issues that affect them. For example, Geisinger in 2006 established a biobank after conducting a survey to assess community attitudes toward genetic research and approaches to patient consent.

Schwartz spoke to how previous national bioethics bodies in the United States have sought public engagement as part of their deliberative process. There has been, he said, significant variation in how commissions have approached this objective. Some commissions merely provided public notice of their meetings and made their meeting minutes available to the public. In 1994, the National Advisory Committee on Human Radiation Research went much further, actually holding meetings in affected communities and reaching out to interview individuals and families who had participated in radiation research. The National Bioethics Advisory Committee had three public members, a requirement written into its charter.

Both Davis and Schwartz encouraged the Bioethics Commission to consider applying democratic deliberation to its own work as a way to increase public engagement in bioethics issues.

“It has to be more than just doing it in public,” Davis said. He noted that he’s attended commission meetings with 400 people in attendance, as well as others with only 10 attendants. “I worry about what it means to do ethics in public when there are only 10 people in the audience.”

Schwartz agreed. “Trying to systematically understand the concerns, the hopes, the worries of citizens at-large seems a good thing,” he said.

After a short break, we will hear from three speakers who will explore how to bring theory on public engagement with bioethics into practice.

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Lessons from Democratic Deliberations https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/05/27/lessons-from-democratic-deliberations/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/05/27/lessons-from-democratic-deliberations/#respond Wed, 27 May 2015 15:22:42 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1639 The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) launched its discussion about democratic deliberation in bioethics this morning by focusing on how to connect theory to practice. The Bioethics Commission heard from James Fishkin, Ph.D., the Janet M. Peck Professor of International Communication and director of the Center for Deliberative Democracy at Stanford University, and Scott Kim, M.D., Ph.D., a senior investigator in the Department of Bioethics at the National Institutes of Health.

Fishkin has worked extensively to apply the theory of democratic deliberation to create informed public policy discussions. During this morning’s session, Fishkin shared his experience conducting 70 democratic deliberation polls in 22 countries, most recently in Tanzania. He explained that he combines a random sampling of the public with specific conditions designed to facilitate free and respectful group deliberation.

In Tanzania, for example, Fishkin worked with the government to recruit 400 citizens to attend a two-day educational meeting, where they were briefed extensively on natural gas policy and participated in group discussions. They were polled both before and after the meeting. Results showed that attending the meeting significantly affected their views.

Fishkin explained that simply giving people information is not sufficient to engage them on a policy issue. Open discussion among people of diverse viewpoints in an environment of mutual respect is essential, he said.

“Democratic deliberation is not populism,” Fishkin said. “Democratic deliberation is an attempt to convene the people under conditions where they really think about the tradeoffs and competing values.”

Kim noted that measuring public values on moral and ethical issues—including bioethical issues—is challenging. He described how he and his colleagues applied democratic deliberation to assess public opinion on surrogate decision-making by family members of people with Alzheimer’s disease.

Similar to what Fishkin found, Kim said that participating in democratic deliberation had a strong effect on people’s views.

“The process is seen as fair and trustworthy by participants,” Kim said. Indeed, he noted that people who participated in democratic deliberation said that they were willing to abide by the group’s decision, even if it did coincide with their personal views.

Up next, the Bioethics Commission will discuss democratic deliberation in bioethics at the national level.

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Bioethics Commission Meeting 21: Live from Philadelphia https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/05/27/bioethics-commission-meeting-21-live-from-philadelphia/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/05/27/bioethics-commission-meeting-21-live-from-philadelphia/#respond Wed, 27 May 2015 13:07:58 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1635 We are live from Philadelphia, blogging the 21st public meeting of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission). The Bioethics Commission is meeting today, May 27, from 9 a.m. to 4:30 p.m. EDT.

At this meeting, the Bioethics Commission will discuss the role of deliberation and education in bioethics. The Bioethics Commission is exploring the idea of teaching deliberation as a tool to promote ethical literacy.

You may follow the proceedings of the Bioethics Commission’s meeting here at this blog, and on the live webcast. The webcast and transcripts from the meeting will be archived and available following the meeting at www.bioethics.gov.

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Deliberation and Education in Bioethics: Overview https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/11/06/deliberation-and-education-in-bioethics-overview/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/11/06/deliberation-and-education-in-bioethics-overview/#respond Thu, 06 Nov 2014 19:34:38 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1489 In the final session of its nineteenth public meeting, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) heard from a panel of experts on deliberation and bioethics education, a theme that has been central throughout the Commission’s work since it was established by President Obama in 2009.

In introducing the new project this morning, Bioethics Commission Chair Amy Gutmann, Ph.D., noted that while all of the Commission’s reports to date have been topic-specific, its commitment to public bioethics and to related educational and deliberative efforts has been a constant. “Recognizing that education is required for informed deliberation, and deliberation enhances education at all levels, this new report will integrate deliberation and education as overarching themes of the Commission’s work, and focus on their symbiotic relationship as twin pillars of public bioethics,” Gutmann said.

Daniel Levin, Ph.D., associate professor of political science at the University of Utah, started the discussion by addressing the role of deliberation in public bioethics forums—such as the national meetings of the Bioethics Commission—in informing public understanding of bioethics.

Levin noted that public forums such as the Bioethics Commission are important to ensuring that policy discussions on complex and important issues that concern the public—but in which the public isn’t necessarily engaged—are transparent and serve the public.

Research has shown that Americans are “conflict avoidant” and do not like to engage in discussions of controversial issues, Levin said.  However, he added, “Americans are concerned about the process itself, especially that special interests not be allowed to have undue influence, and they believe that the political process should be transparent.”

Next, Diana E. Hess, Ph.D., professor of curriculum and instruction at the University of Wisconsin-Madison and senior vice president of the Spencer Foundation, examined the relationship between democratic deliberation and both public and medical education.

“People need to be taught how to engage in high-quality deliberation,” Hess said, starting in high school and throughout the course of their education, on complex issues, including issues related to bioethics.

She noted that anyone –not just physicians and bioethicists—may at some point in their life be faced with a bioethical decision, such as how to deal with care at the end of life.  “You’ve got a responsibility to prepare people not just to participate in public policy discussions,” Hess told the Commission.  “What is education for? We want to create a better society, but we want people to have better lives.”

Lisa Lehmann, M.D., Ph.D., M.Sc., director of the Center for Bioethics at Brigham and Women’s Hospital and associate professor of medicine and medical ethics at Harvard Medical School, rounded out the panel by focusing on the importance and value of ethics education in the education of medical professionals.

Lehman said bioethics education can foster the “moral courage” needed for medical professionals to “put ethical principle into action.”  She defined moral courage as “the courage to do what’s right for patients, despite the professional risks … even if it conflicts with the law.”

However, she agreed with Hess that all members of society should have some bioethics education, so that they can make informed decisions such as whether to be an organ donor, for example.

Gutmann asked the panel if the example of quarantines during an Ebola outbreak might be the kind of case study that could help with bioethics education.  She noted that such a case study brings science, law, and ethics together.

Hess replied that it is a “close to perfect case study.”  She said that it is both highly authentic and that it has a lot of conflicting core values.

The Bioethics Commission’s next public meeting is scheduled for Feb. 5-6, 2015. The Commission plans to meet in Washington, D.C.

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Deliberation and Bioethics Education: A Case Study of Public Health Emergency Response https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/11/06/deliberation-and-bioethics-education-a-case-study-of-public-health-emergency-response/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/11/06/deliberation-and-bioethics-education-a-case-study-of-public-health-emergency-response/#respond Thu, 06 Nov 2014 18:47:54 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1487 This morning, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) turned its attention to its next report topic: deliberation and bioethics education.  The Bioethics Commission advises President Obama and his administration on issues arising from advances in biomedicine and related areas of science and technology and, in so doing, educates the nation on bioethical issues.  This new project will focus on the symbiotic relationship between deliberation and education as twin pillars of public bioethics.  Education is required for informed deliberation, and deliberation enhances education at all levels.

The Bioethics Commission dove into its new project this morning with back-to-back sessions examining a case study in public health emergency response. Guest speakers Anthony S. Fauci, M.D., director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health (NIH), andLawrence O. Gostin, J.D., LL.D., university professor and director of Georgetown University’s O’Neill Institute for National & Global Health Law and director of the World Health Organization Collaborating Center on Public Health Law & Human Rights,  brought up compelling ethical topics related to the timely debate of restriction of movement provisions in response to an epidemic.

“There are very few examples that are stronger than a global public health crisis to focus our minds and drive home the importance of public education and proactive deliberation,” explained Bioethics Commission Chair Amy Gutmann, Ph.D.

Gostin launched the discussion by describing the various sets of ethical standards that should come into play as issues like quarantine and restriction of movement are considered.  Quarantine and restriction of movement is just one of the difficult ethical issues that have been brought up by the current Ebola virus disease outbreak in several western African countries.

In particular, Gostin cautioned against blanket quarantines. “When we think carefully, we should use good science and good constitutional law, both of which would require an individualized assessment of risk before limiting individual liberty,” he said.

Gostin also stressed the importance of public trust to effective public health enforcement.  “Whatever decisions policymakers make, they need to be made in partnership and shared understanding with those who are most affected,” Gostin said. “If AIDS taught us anything, it taught us that the first response is social mobilization.”

Next, Fauci discussed how science should inform ethical guidance for public health decision-makers managing Ebola in the United States.  Fauci has played a leading role in the national response to Ebola. He has testified before Congress and has been interviewed by national news media on the importance of a science-based approach to containing the Ebola epidemic in western Africa and minimizing risk in the United States.

Fauci also helped care for a Dallas area nurse who was infected with Ebola while caring for a patient with Ebola.  This involvement, he said, puts him at low risk for infection, and, in some states, would mean that he would be quarantined. He cited a recent public health conference in New Orleans that banned participation of health care workers who had traveled to West Africa – “and those are the very people you want there.”

Blanket quarantines, he said, are not based on scientific evidence, but arise from a desire to assuage public fear.  The real danger, he added, is that blanket quarantines and restrictions can undermine efforts needed to contain outbreaks such as Ebola because they discourage health care workers from providing care to those who are infected.

What’s most needed, Fauci said, is public education.  He contrasted the public response to the early days of the AIDS epidemic with the current reaction to Ebola.  In AIDS, “we had a growing, insidious epidemic and very few people were paying attention to it.  Here we have two cases, and we have mobilized everyone, including the President of the United States.”  He added, “The lesson learned is you’ve got to keep educating the public over and over again.”

Following the case study discussions, the Bioethics Commission went on to broaden its discussion to the goals and contributions of deliberation and bioethics education generally.

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Live from Salt Lake City https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/11/06/live-from-salt-lake-city-2/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/11/06/live-from-salt-lake-city-2/#respond Thu, 06 Nov 2014 16:11:10 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1485 Welcome back to live blog coverage of the nineteenth public meeting of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission).  The Bioethics Commission is meeting in Salt Lake City today, November 6, 2014, from 9 a.m. to noon MT.

Yesterday, the Bioethics Commission continued its review of ethical issues associated with neuroscience research and application and began deliberating on recommendations in response to President Obama’s request regarding the BRAIN Initiative.  Today the Bioethics Commission will begin discussing its new project – deliberation and bioethics education.

The Bioethics Commission will hear from two panels this morning.  For the first panel, guest speakers Anthony S. Fauci, M.D., of the National lnstitutes of Health and Lawrence O. Gostin of the World Health Organization Collaborating Center on Public Health Law and Human Rights will present on a case study of public health emergency response.  The second panel will provide an overview of deliberation and bioethics education, with remarks by Daniel Levin, Ph.D., associate professor of political science at the University of Utah; Diane E. Hess, Ph.D., professor of curriculum and instruction at the University of Wisconsin-Madison; and Lisa Lehmann, M.D., Ph.D., M.Sc., director of the Center for Bioethics at Brigham and Women’s Hospital.

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

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Bioethics Commission Discusses Law and Neuroscience https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/11/05/bioethics-commission-discusses-law-and-neuroscience/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/11/05/bioethics-commission-discusses-law-and-neuroscience/#respond Wed, 05 Nov 2014 22:40:15 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1480 This afternoon, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) turned its attention to law and neuroscience as part of its deliberations on potential recommendations related to neuroscience that it may offer to the President.

Bioethics Commission Chair Amy Gutmann, Ph.D., began by focusing discussion questions around whether and how to use neuroscience technologies in the courtroom.

“What can neuroscience in its current capacity tell us about whether any individual is legally blameworthy for his or her actions?” Gutmann asked. “What is the potential for neuroscience to answer this question? What can it tell us about moral responsibility and blameworthiness, as distinct from legal responsibility and blameworthiness?”

Commission Member Nita A. Farahany, J.D., Ph.D., framed the discussion by noting the different legal contexts in which neuroscience research is being cited. For example, lawyers are bringing neuroscience research into the courtroom to substantiate claims about defendants’ competency to stand trial, as well as to challenge traditional notions about what a mental state is and how it should be measured. Neuroscience has also come up in sentencing as a way of determining the degree to which a person is morally responsible because of diminished capacity, and whether sentencing for such an individual should be weighted more toward retribution or toward rehabilitation. Finally, criminal courts have also looked to neuroscience as a predictor of a defendant’s future dangerousness.

Farahany said she has also seen neuroscience research cited in in certain civil cases. In the past, it has been difficult to prove whether a person is suffering pain from exposure to a toxic substance. Now, some civil plaintiffs are using neuroscience to do just that. In the arena of constitutional law, the U.S. Supreme Court has cited neuroscience research with regard to the culpability of juvenile defendants accused of capital crimes. Farahany noted that neuroscience is also beginning to highlight gaps in certain constitutional protections, such as freedom of speech and new technologies that reveal the brain’s visual imagery.

Farahany cautioned about overstating the capacity of neuroscience to inform law. “When we start using a science like neuroscience to predict behavior before it can do so, it can derail the credibility of science as a whole,” she said, citing “a duty to tread carefully in an area of nascent science.”

Commission Member John D. Arras, Ph.D., observed that some legal experts have questioned whether neuroscience upends the legal notion of people as ‘agents of action’ capable of making decisions in accordance with society’s rules and laws. This argument, he said, “strips people of their personhood and views them as things to be moved around and not responsible for their actions. That is something to worry about.”

Tomorrow the Bioethics Commission will shift its focus from neuroscience and related ethical issues to deliberation and bioethics education. The discussion will include a panel examining a case study of public health emergency response featuring Anthony S. Fauci, M.D., of the National lnstitutes of Health and Lawrence O. Gostin of the World Health Organization Collaborating Center on Public Health Law and Human Rights.

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Bioethics Commission Deliberates Consent Capacity https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/11/05/bioethics-commission-deliberates-consent-capacity/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/11/05/bioethics-commission-deliberates-consent-capacity/#respond Wed, 05 Nov 2014 21:20:26 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1476 The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) is devoting the majority of today’s public meeting in Salt Lake City to discussing potential neuroscience-related recommendations that it could offer to President Obama.

This morning, Bioethics Commission Chair Amy Gutmann, Ph.D., noted that three areas have emerged throughout the public meetings at which the Bioethics Commission has discussed ethical issues related to neuroscience. They are cognitive enhancement, consent capacity, and law and neuroscience. A list of Commission meetings relevant to neuroscience can be found here on bioethics.gov.

After spending the second half its morning discussing cognitive enhancement, the Bioethics Commission moved on to discuss consent capacity, specifically research with participants whose capacity is potentially diminished or absent. Many of the conditions that neuroscientists study can affect a person’s capacity to consent to research.

“To generate knowledge about and treatments for these conditions, affected individuals must be included in research – critically, with ethical safeguards in place,” said James W. Wagner, Ph.D., Bioethics Commission Vice Chair. “Several ethical considerations arise. For example, how do we ensure adequate protections for research participants with impaired capacity? What procedures should be in place to assess consent capacity? And how might we address stigma associated with impaired consent capacity?” Wagner asked.

Wagner asked Commission Members Daniel P. Sulmasy, M.D., Ph.D., FACP, and Christine Grady, R.N., Ph.D, to help frame the discussion.

Sulmasy suggested that the Bioethics Commission consider diminished capacity not only in the research setting but in the clinical setting as well. He noted that research on clinical capacity is largely based on clinical exams of patients. Instead of viewing capacity solely as an issue in neuroscience research, it could be treated as a topic of neuroscience research. Such research, he said, could “help us better understand what capacity is from a scientific point of view, how to assess it, and how to assess it again along a very complicated continuum…and, if there are ways, how to improve or restore capacity.”

Grady addressed some of the legal issues around capacity. She observed that capacity is not a static condition; it changes. Therefore researchers need to keep in mind that even after a person with diminished capacity gives consent, there needs to be ongoing capacity assessment as additional decision points arise.

She also noted that, in practice, laws regarding capacity and decision-making are made at the state level, so there is little uniformity. Furthermore, very few state laws explicitly address capacity to make decisions regarding research participation; most are geared toward medical decisions.

Grady also noted that surrogates are frequently viewed as a solution for decision-making issues, but that there is a need for greater clarity around the appointment of legally authorized surrogates to act on behalf of persons with diminished capacity. “Who should be able to serve as a legally authorized representative for the purposes of enrolling people in research?” she said.

The Bioethics Commission will spend its last session today discussing law and neuroscience.

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