The blog of the Presidential Commission for the Study of Bioethical Issues

Bioethics Education: Skyping into a Bioethics Undergraduate Class, Live from Meeting 16

Recently the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) convened its 16th public meeting to discuss neuroscience and related ethical issues. During that meeting, Commission Chair, Amy Gutmann, Ph.D., and Vice Chair, James W. Wagner, Ph.D., held an impromptu question and answer session with a University of Pennsylvania Introduction to Bioethics class. Bioethics Commission Senior Advisor Jonathan Moreno, Ph.D., who teaches the class at Penn, had asked his students to watch the meeting webcast.  He was Skyping with his class from the meeting in Washington during a meeting break when Gutmann and Wagner spontaneously joined Moreno at his computer and took part in the class’ conversation.

“The students were very surprised,” said the class graduate assistants Mary Mitchell and Matt Hoffarth. Gutmann is the president of the University of Pennsylvania.  “They were a little intimidated but were excited and it was a great opportunity to illustrate many of the principles the students have encountered.”

The introductory course is composed of about 80 students ranging from freshman with a general interest in bioethics to seniors in Penn’s Health and Societies major. “Within the major, many of the students are interested in going into policy work so it was a great for them to see that process and talk to two leaders,” said Hoffarth.

Before the Skype call, the students had watched Session 4 of Meeting 16, “Ethics of Communication about Neuroscience Research by Scientists and Journalists.” Based on this discussion, the students asked Gutmann and Wagner about communicating science to the general public. “The conversation was really salient to the students because it was about education,” said Mitchell. “It was great that the [Commission] was talking about educating non-scientists. It helped the class feel like a part of the discussion.”

Moreno fielded questions about the content of the session and how it tied into what the class is studying.  Both Hoffarth and Mitchell agreed that it was a wonderful teaching moment and one of their most memorable classes of the year.

An overarching theme throughout the Bioethics Commission’s reports has been the need for improvement in bioethics education for scientific and medical professionals. “Engaging directly with students and encouraging them to watch and discuss our public meetings is another way to stimulate interest in bioethics scholarship,” Commission Executive Director Lisa M. Lee, Ph.D., said.

In addition, the Bioethics Commission has developed and is providing free pedagogical materials based on the contemporary issues addressed by the Commission. The educational materials and archived webcasts of all past Commission meetings are available for free at Bioethics.gov.

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Advancing Empirical Bioethics Research and Education at the Annual Meeting of the Association for Practical and Professional Ethics

Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) Associate Director, Michelle Groman, J.D., spoke in Jacksonville, Florida at the twenty-third Annual Meeting of the Association for Practical and Professional Ethics (APPE), which took place Feb. 27 to March 2, 2014. The panel discussion entitled “Teaching and Learning Empirical Bioethics: Resources from the Presidential Bioethics Commission” also included Holly Taylor, Ph.D., M.P.H., of the Johns Hopkins Berman Institute of Bioethics, and Leila Jamal, M.Sc., doctoral candidate in Bioethics and Health Policy at the Johns Hopkins Bloomberg School of Public Health.

The session, which took place on Saturday, March 1 from 3:30 to 5:00pm, focused on teaching and learning empirical bioethics. Taylor first spoke on the value of empirical bioethics research and education, addressing the need to educate future generations of bioethicists in social science research methods. She also discussed pedagogical approaches to training in the social sciences.

Groman discussed the Bioethics Commission’s Human Subjects Research Landscape Project – Analysis Dataset (dataset), which comprises project-level data about human subjects research supported by federal departments and agencies from 2006 to 2010, and was developed as part of the Bioethics Commission’s December 2011 report, Moral Science: Protecting Participants in Human Subjects Research. The dataset and subsequent report were developed in response to a charge from President Obama “to determine if Federal regulations and international standards adequately guard the health and well-being of participants in the scientific studies supported by the Federal Government.”

During the session, Jamal spoke about her experience working with the Bioethics Commission’s dataset as part of her graduate work in public health. She explained all stages of her research project and presented her findings. She highlighted questions about federally supported human subjects research that the dataset could shed light on, such as how the Centers for Disease Control and Prevention prioritizes its limited resources. She also reflected on the value of engaging in empirical research methods as a graduate student.

Finally, the panelists engaged the audience in a discussion on methods of teaching and learning empirical bioethics as well as using the Bioethics Commission’s dataset as a tool in these approaches. According to Groman, “after the panel presentations, many audience members raised interesting questions about federally supported human subjects research that the Landscape Project dataset could be used to address.”

Also as part of the APPE Annual Meeting’s Bioethics Program Track, Bioethics Commission staff members Misti Anderson, M.S., M.A., Karen Meagher, Ph.D., and Nicolle Strand, J.D., M. Bioethics, spoke on “Multidisciplinary Implementation of Bioethics Commission Education Modules.”

 

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Bioethics Commission staff discuss the multidisciplinary implementation of Commission education modules at APPE

Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) staff members Misti Ault Anderson, M.S., M.A., Karen Meagher, Ph.D., and Nicolle Strand, J.D., M. Bioethics, have just returned from Jacksonville, Florida after a successful presentation at the Twenty-third Annual International Conference of the Association for Practical and Professional Ethics (APPE). As part of the panel “Multidisciplinary Implementation of Bioethics Commission Education Modules,” Anderson, Meagher, and Strand demonstrated how two of the Bioethics Commission educational modules on informed consent might be taught in three different educational settings: a philosophy course, a science course, and a law school lunch-and-learn.

The presenters drew from the Informed Consent Background and from the Informed Consent in Privacy and Progress in Whole Genome Sequencing modules, applying the content to each subject matter and educational setting. Informed consent is particularly interesting in genomics given that as the cost of whole genome sequencing rapidly declines, its increased use in research and health care raises significant privacy issues regarding the availability and dissemination of personal genomic information.

Meagher illustrated how the topic-based educational modules can be used to update a syllabus for a course covering philosophical aspects of bioethics. The modules can be mined for recommended reading, used to modify a lecture, or combined to facilitate class discussion.

Anderson continued with examples of how these modules can be used to provide foundational bioethical concepts for biology or genetics students and future researchers. Students can benefit from an explanation of the ethical necessity of informed consent, history of and applicable federal regulations, and challenges in the informed consent process.

Strand rounded out the presentation with a demonstration of how the modules can be used to educate future lawyers who might work either for the government with federal research protection regulations or as legal counsel for universities or private companies conducting human genetic or genomic research. An educator might use the modules to help future lawyers understand the importance of informed consent, specifically in genetic and genomic research and clinical genomics; develop consent materials; analyze the compliance of consent processes with federal regulations; and identify common challenges in implementing informed consent processes.

Bioethics education can be incorporated into courses in many disciplines, at all levels, in traditional and nontraditional settings. The Bioethics Commission’s topic-based modules are designed to be flexible to support multiple approaches to implementation, for example, embedding content and exercises into existing lectures or creating a sequence of in-depth discussions on the topic in a seminar. “Session participants were very engaged and asked about using our materials to train IRBs [institutional review boards], and about how to use our modules to encourage science educators to integrate ethics into their curricula,” Anderson said.

The Bioethics Commission’s pedagogical materials demonstrate ethical analyses and applications of foundational ethical principles to contemporary biomedical and scientific challenges. The educational modules integrate material across applicable Bioethics Commission reports, including Privacy and Progress in Whole Genome Sequencing, “Ethically Impossible” STD Research in Guatemala from 1946 to 1948, and Moral Science: Protecting Participants in Human Subjects Research.

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Public Engagement Past and Present: From Gopher to Website

February 2014 marks the 20th anniversary of the creation of the Advisory Committee on Human Radiation Experiments (ACHRE) by President Clinton in 1994. To make its work publicly accessible ACHRE created a “gopher,” what we now call a website, the first of its kind for a bioethics commission.

Tasked with reviewing the ethical and scientific standards of U.S. government-sponsored human experiments involving intentional exposure to radiation, ACHRE believed that the subject-matter of its review and the human stories that constituted it imposed a special responsibility to “disseminate as broadly as possible the results of its investigations, the implications of that history for our own time, and its best judgment concerning the rights and responsibilities of those involved.”

ACHRE’s gopher included historical information about the human radiation experiments, fact sheets about radiation, records of other government documents concerning the experiments, meeting transcripts, and the Committee’s Final Report.  Subsequent bioethics commissions followed ACHRE’s lead by using the internet to make their processes and deliberations easily accessible to the public. The website for the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) continues in this tradition and contains similar types of information that ACHRE thought it so important to make available, including transcripts, reports, and details about Bioethics Commission members and staff.  But information technology has come a long way since ACHRE’s gopher, and the Bioethics Commission’s website also embraces new mechanisms for keeping the public up-to-date on its activities, such as regular blog posts, Twitter updates, videos featuring interviews with Commission members, and links to educational resources.  These features bring the Bioethics Commission to life and provide new opportunities for public engagement.

Jonathan Moreno, Senior Advisor to the Bioethics Commission and former staff member at ACHRE, had first-hand experience of the development of ACHRE’s gopher: “My first email address was moreno@achre.gov in 1994. ACHRE wanted very much to take advantage of the Internet text platforms of the day (“graphical” interfaces made possible by the Web were still somewhat exotic), because the issues were of great public concern and there were relevant cases scattered throughout the country. It’s very satisfying to see the improvements in public access to commission activities and presentation of commission materials since then.”

As a portal for information, news, education and public engagement, the Bioethics Commission’s website continues the legacy of ACHRE’s gopher and its commitment to accessibility and transparency.

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Anticipating and Communicating Through Education

Since its inception, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has repeatedly recommended that ethics education be widely available at the undergraduate, graduate, and professional levels. In Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts, the Bioethics Commission made the broad recommendation that public and private entities create educational materials for all stakeholders describing the ethical, practical, and legal questions raised by incidental and secondary findings.

The Bioethics Commission highlighted entities in each context it believed to be well-placed to provide additional education materials. In the clinical context, private organizations such as the American Association of Medical Colleges and the Accreditation Council for Graduate Medical Education could provide materials to guide clinicians on managing incidental and secondary findings. In the research context, the Public Responsibility in Medicine and Research’s (PRIM&R) institutional review board (IRB) education and certification programs could provide training to IRB members on these ethically challenging topics. In the direct-to-consumer (DTC) context, governmental agencies, like the U.S. Federal Trade Commission and the Food and Drug Administration, should continue to provide guidance on their websites about the types of findings DTC services could reveal.

The Bioethics Commission is also well-placed to provide ethics education guidance. Beyond the recommendations set forth in its reports, the Bioethics Commission continues to reinforce its commitment to ethics education itself. Through online modules, context-specific study guides, and source data, the Bioethics Commission strives to supplement existing curricula in traditional and non-traditional settings, including the classroom, workplace, or IRB training sessions. The staff continues to develop additional educational content.

Additionally, the Hastings Center and the Bioethics Commission are co-sponsoring an issue of the Hastings Center Report to address current themes in bioethics education, including the state of bioethical education, methods for bioethics instruction, and more. For more information on the submission requirements please visit this website.

For more information on all of the Bioethics Commission’s educational efforts, please watch the video Promoting and Providing Materials for Bioethics Education. The Bioethics Commission also 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 available at no cost at www.bioethics.gov.

The Bioethics Commission encourages feedback on the materials at education@bioethics.gov.

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Educación Ética: La Guía de Estudio para “Éticamente Imposible” Investigación sobre ETS en Guatemala de 1946 a 1948.

La Comisión Presidencial para el Estudio de Cuestiones Bioéticas se complace a publicar la traducción en español de la Guía de Estudio para “Éticamente Imposible” Investigación sobre ETS en Guatemala de 1946 a 1948.

En lo que actualmente se reconoce como un infame episodio en la historia de la ética de investigación, el Servicio de Salud Pública de EE.UU. (PHS, por sus siglas en inglés) llevó a cabo experimentos sobre enfermedades de transmisión sexual (ETS) en Guatemala de 1946 a 1948. Los experimentos sobre ETS en Guatemala se llevaron a cabo bajo supervisión continua del PHS y con la aprobación y participación de funcionarios del gobierno de Guatemala. Involucraron, exponiendo intencionalmente e infectando, a varias poblaciones guatemaltecas vulnerables, incluidos encarcelados, soldados y pacientes psiquiátricos, como sujetos de investigación a enfermedades, sin su consentimiento.

Después de que una publicación académica reveló la existencia de registros de estos experimentos en el 2010, la Comisión Presidencial para el Estudio de Cuestiones Bioéticas (la Comisión) realizó una investigación detallada de los eventos que rodearon e incluyeron los experimentos. Su informe, “Éticamente Imposible”: Investigación sobre ETS en Guatemala de 1946 a 1948, ofrece una descripción detallada y una evaluación ética de estos estudios.

La Comisión diseñó esta Guía de Estudio para “Éticamente Imposible” Investigación sobre ETS en Guatemala de 1946 a 1948para ayudar a los que deseen concentrarse en la importancia ética de estos experimentos. Cada sección de la Guía incluye una recitación de datos relevantes, extractos de documentos contemporáneos a los experimentos y un conjunto de lecturas adicionales. Este material será de ayuda para los lectores que deseen explorar el expediente con mayor detalle o prepararse para una discusión más detallada de la investigación a la luz de esta grave violación a la ética.

Todos los materiales de educación de la Comisión son libre y disponible en Bioethics.gov.

Ethics Education: A Study Guide to “Ethically Impossible” STD Research in Guatemala from 1946 to 1948

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) is pleased to publish a Study Guide to “Ethically Impossible” STD Research in Guatemala from 1946 to 1948 in Spanish.

In what is now recognized as an infamous episode in the history of research ethics, the U.S. Public Health Service (PHS) conducted sexually transmitted disease (STD) experiments in Guatemala from 1946 through 1948. The Guatemala STD experiments were carried out with ongoing oversight by PHS and with the approval and engagement of Guatemalan government officials. They involved intentionally exposing and infecting several vulnerable Guatemalan research subject populations—prisoners, soldiers, and psychiatric patients—to disease, without their consent.

After a scholarly publication disclosed the existence of records of these experiments in 2010, the Presidential Commission for the Study of Bioethical Issues (the Bioethics Commission) conducted a detailed investigation of the events surrounding and including the experiments. Its report, “Ethically Impossible” STD Research in Guatemala from 1946 to 1948, provides a detailed description and ethical evaluation of these studies.

The Bioethics Commission designed this Study Guide to “Ethically Impossible” STD Research in Guatemala from 1946 to 1948 to assist those who wish to focus on the ethical significance of these experiments. Each section of the Guide includes a recitation of relevant facts, excerpts from documents contemporaneous to the experiments, and a set of further readings. This material will assist readers who wish to explore the record in further detail or prepare for a more informed discussion of research in light of this gross violation of ethics.

All of the Bioethics Commission’s education materials are free and available on Bioethics.gov.

 

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Informed Consent in the Bioethics Commission’s Work

The bioethical principle of respect for persons has played a central role in the deliberations and work of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission), especially in its recent report, Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts. The principle of respect for persons recognizes the importance of self-determination – the autonomous ability to identify personal preferences and to act on those desires. This principle establishes the ethical foundation for informed consent processes – procedures that provide people with information needed to make consequential decisions consistent with their values.

In October 2012, the Bioethics Commission released its report Privacy and Progress in Whole Genome Sequencing.  In Privacy and Progress, the Bioethics Commission addressed, in part, incidental findings discovered during large-scale genetic sequencing. One of the recommendations in that report (Recommendation 3.3) emphasized the importance of informed consent regarding the likelihood of the discovery of incidental findings during whole genome sequencing, and the practitioner’s plan for managing and disclosing those findings. In this recommendation, the Bioethics Commission anticipated the central role that informed consent would play in its next report – a cross-context and cross-modality ethical analysis of incidental and secondary findings.

In Anticipate and Communicate, the Bioethics Commission made four recommendations regarding informed consent: one recommendation applicable in all contexts and one recommendation in each of the clinical, research, and direct-to-consumer (DTC) contexts. The overarching recommendation, Recommendation 1, urges practitioners to describe to potential recipients the incidental and secondary findings that are likely to arise or be sought from the test or procedure being conducted, and to describe the practitioner’s plan for managing and disclosing those findings.

In the clinical context, Recommendation 6 specifies that the clinical informed consent process should consist of shared decision making (that includes both patients and clinicians) about the return of incidental and secondary findings, and urges clinicians to employ effective methods of communicating information about the risk associated with such findings. In the research context, Recommendation 11 advises that the informed consent process should include a discussion about the scope of potential incidental and secondary findings, the process for managing the findings that do arise, and whether and how participants might opt out of receiving certain types of incidental findings. And in the DTC context, Recommendation 15 states that DTC companies should provide consumers with sufficient information to enable informed decision making regarding purchasing a DTC service and should explain clearly which findings will be disclosed and which will not.

All four of these recommendations demonstrate the Bioethics Commission’s commitment to further elucidating what informed consent entails in ethically nuanced situations. In accordance with the principle of respect for persons, these recommendations call on professionals and members of the public alike to be prepared, in advance, for how tests and procedures in the clinic, research, and DTC contexts can reveal information that might influence personal decision making both before and after testing. In addition, the Bioethics Commission has developed, and continues to develop, pedagogical materials, to aid educators in teaching about bioethics in a variety of settings; these materials include a module on informed consent and the role it plays in the Bioethics Commission’s reports, including Ethically Impossible and Privacy and Progress.

The Bioethics Commission firmly believes that informed consent is one of the central mechanisms for encouraging professional practices that recognize the importance of self-determination – as demonstrated both in its recent work on incidental and secondary findings, and in its other reports and pedagogical materials. Informed consent fosters shared decision making between practitioners and potential recipients. 

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Examining Models for Integrating Ethics and Neuroscience Research

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) this morning started the second day of its 16th public meeting by calling on four speakers to share their thoughts on strategies for integrating ethics into neuroscience. The speakers included Pamela Sankar, Ph.D., Associate Professor in the Department of Medical Ethics and Health Policy at the University of Pennsylvania; Barbara Herr Harthorn, Ph.D., Director of the National Science Foundation’s Center for Nanotechnology in Society; Mildred Cho, Ph.D., Associate Director of the Stanford Center for Biomedical Ethics; and Erik Fisher, Ph.D., Associate Director for Integration at Arizona State University’s Center for Nanotechnology in Society.

Amy Gutmann, Ph.D., President of the University of Pennsylvania and Chair of the Bioethics Commission emphasized that ethical issues are not unique to neuroscience, however they could see increased public attention given that neuroscience is a young science and concerns an organ that helps define who people are. That’s why the Bioethics Commission is exploring ways to integrate ethics into neuroscience early, said Amy Gutmann.

Sankar told the panel of the history of the Ethical, Legal, and Social Implications Research Program (ELSI), founded as part of the Human Genome Project. While the program struggled to bridge the gap between ELSI research and policy, it “gave us some very good models that we could look to going forward.” One of those models includes the establishment of consortia of researchers who get together and discuss ethical issues. “I think they resulted in the creation of a new community of people” that fostered positive discussion, she said.

Meanwhile, Harthorn agreed that the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative will raise important ethical questions. Determining the nature and extent of the ethical and societal concerns that the initiative must address will require funding for social, ethical and behavioral research and in infrastructure for coordinating that work, Harthorn said.

Cho told the Bioethics Commission about research ethics consultation services (RECS), which are programs to provide ethics guidance to scientists on their research. Survey and interview data that Cho and other scholars have collected suggest that a majority of scientists find these consulting services to be personally or professionally useful. Scientists, when planning a research project, can go to these services with a specific ethical concern in mind or they can ask the consultants to assess whether any ethical concerns exist to begin with. “I think that research ethics consultation is becoming a more established institutional mechanism for integrating ethical and social implications into biomedical research,” she said.

Fisher, meanwhile, discussed how embedding a social scientist or humanist into a research lab for a few months can help scientists learn how ethics plays into their own work.

Despite the existence of several models of ethics integration, several speakers noted that scientists are not always aware of scientific ethics resources that are available to them; they do not understand what ethics means in science, or may not be interested. Some of the speakers warned that scientists cannot be compelled to be curious about or strongly mindful of ethics. Sometimes scientists may feel reluctant to embrace change in their workplace climate, Fisher said. Some speakers noted the need to explain why ethics important to science and how to get scientists interested in ethics.

Sankar argued for reforming science education from its earliest stages so that up-and-coming scientists learn to see how ethics goes hand-in-hand with scientific research. “The day has passed where we can have [only] commissions or consortia and feel like we’re fundamentally dealing with it,” she said. Sankar also said some scientists may view learning about and practicing good ethics more about complying with rules than about advancing responsible research. It might be wise, she said, to frame ethics integration to scientists as how scientists can make their science better, not, “What do we do to stay out of trouble?”

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Discussion Highlights on Neuroscience and Related Ethical Issues

In a roundtable discussion to conclude day one of Meeting 16, Members of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) and today’s invited speakers further deliberated ways to integrate ethics early into neuroscience research, as part of the Commission’s charge from President Obama

“Just as you wouldn’t want students to be taught genetics by somebody who is not an expert in the science of genetics, so too you shouldn’t want scientists to be taught ethics from somebody who is not expertly trained in ethics.” — Amy Gutmann, Ph.D., President of the University of Pennsylvania; Chair of the Bioethics Commission

“We probably need to have many different models to accomplish the goals that we need to accomplish … There is a body like ours that can deliberate on that and make deliberations at the highest levels and hopefully that will [spread] down. That’s one type of model. Another type of model is at any of our institutions, there are five or six investigators who want to think about a new research program. They need to consult with somebody there about that particular program. So these are completely different models, and we need to have space for new kinds of models.” — Raju Kucherlapati, Ph.D., Paul C. Cabot Professor, Harvard Medical School Department of Genetics; Bioethics Commission Member

“This is a conversation about teaching something broadly about the nature of ethics. There is a distinction between primary evidence and derived evidence and the integrity of information — something that can be taught not just to folks who are in neuroscience, but presumably of value to historians and lawyers and just about everyone else.” — James W. Wagner, Ph.D., President of Emory University; Bioethics Commission Vice Chair

“I’m a big believer in [massively open online courses]. I think that’s a fantastic way to interact with the public. There is this ridiculous attitude of looking down at people who want to communicate, it’s [a critique of] the Carl Sagan attitude writ large — people looking down on this because he deigned to communicate with the public … to me one way or another we all basically work with the taxpayer, so we owe them. So MOOCs are one way to pay them back. — Peggy Mason, Ph.D., Chair of the Society for Neuroscience’s Ethics Committee

“I don’t think we can downplay some of the incentives that are creating this hype. Changing behavior is incredibly difficult … At least we need to change some of the incentive structures around publication funding, translational pressure, and career pressure.” — Timothy Caulfield, LL.M., F.R.S.C., F.C.A.H.S., Professor in the Faculty of Law and the School of Public Health, University of Alberta

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Addressing the Scientific “Hype Pipeline:” Communicating Neuroscience Accurately

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) picked up its discussion of ethical issues related to neuroscience early in the afternoon by inviting four speakers to offer insights on the ethics of neuroscience communication. The speakers included Ushma Neill, Ph.D., Editor at Large of the Journal of Clinical Investigation; Stephen Ward, Ph.D., Director of the George S. Turnbull Center at the School of Journalism and Communication at the University of Oregon-Portland; Timothy Caulfield, LL.M., F.R.S.C., F.C.A.H.S., Professor in the Faculty of Law and the School of Public Health at the University of Alberta, Canada; and Eric Racine, Ph.D., Director of the Neuroethics Research Unit at the Institut de Recherches Cliniques de Montréal.

The speakers agreed that many different parties, ranging from scientists to journal editors to journalists to press release writers, have a responsibility to ensure that neuroscience research communicated to the public be accurate and avoid hype. Unfortunately this is not always the case. Hype, for example, can enter at many points in the science communication process, in a sort of “hype pipeline,” Caulfield suggested.

Science journalists have been known to hype stories, Caulfield said. News stories, beyond exaggerating the importance of research findings, can also include false claims, distorted claims, and omissions. And with the proliferation of the internet, blogs, and social media come new forms of journalism and information sharing that do more than just overhype scientific research. They also might not present information impartially or be free of vested interests.

Ward suggested creating a coalition of scientists, science communicators and organizations to “develop a system of writers and informers who at least can provide some segment of the population a place to go” for more reliable science information.

But Caulfield noted that the media is not the only problem. “So much of the hype is embedded in the research,” he said. Some of that hype can originate before the paper is even published – for instance, in the abstracts that the authors write. Researchers also often feel significant pressures to produce high-impact work, ranging from peer pressure and competition among scientists to the pressure to produce results that have commercial application or societal benefit.

Neill noted that journals try to combat hype and ethical lapses in the papers and press releases they publish. Journals have various methods at their disposal to detect fabricated and falsified data and plagiarism. A tool from the Office of Research Integrity (ORI) is able to detect manipulations that scientists might make to figures in their research papers. Journals may deploy these strategies to differing degrees. Neill also said that journals must walk a fine line between generating journalists’ and the public’s interest in a study and overhyping that study.

Ultimately, exaggeration can spread to all steps of the process by which science reaches the public. This “pipeline of hype” may be more like a “cycle of hype,” Caulfield said, as each part of that pipeline feeds into the other parts. Promising sciences can be oversold; overhyped or inaccurately communicated science can also result in poorly informed public policy or research funding decisions, he said.

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About blog.Bioethics.gov

This is a space for the members and staff of the Presidential Commission for the Study of Bioethical Issues to communicate with the public about the work of the commission and to discuss important issues in bioethics.

Learn more about the Presidential Commission for the Study of Bioethical Issues.

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