Whole Genome Sequencing – 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 Ethically Sound Episode 10: Charting a Path Forward https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/11/21/ethically-sound-episode-10-charting-a-path-forward/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/11/21/ethically-sound-episode-10-charting-a-path-forward/#respond Mon, 21 Nov 2016 16:00:01 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=2052 The tenth and final episode of the Bioethics Commission’s podcast series, Ethically Sound, is now available. Today’s episode, “Charting a Path previewscreensnapz001Forward,” focuses on the Bioethics Commission’s two most recent public meetings, during which the Bioethics Commission reflected on the impact of past, present, and future of national bioethics advisory bodies.

Since the 1970s, the U.S. has had a succession of national advisory bodies to provide Congress or the President with expert advice on topics related to bioethics. Other countries also benefit from advisory bodies that provide advice about bioethi
cal issues. During its twenty-fifth and twenty-sixth public meetings, the Bioethics Commission heard
from members of past bioethics advisory bodies, representatives of international bioethics bodies, as well as officials who have been advised by such bodies.

The podcast opens with a narrative from Alex Capron, Professor of Law and Medicine at the University of Southern California. Mr. Capron chaired the Biomedical Ethics Advisory Committee from 1987 to 1990, and served on President William J. Clinton’s National Bioethics Advisory Body from 1996 to 2001. Mr. Capron presented before the commission during Meeting 26, and reflected on his experiences with both of these advisory bodies. In the podcast, Mr. Capron recounts a challenging experience he faced while describing the disciplinary backgrounds of bioethics advisory body staff to policymakers unfamiliar with the interdisciplinary nature of bioethics.

The podcast also includes an interview with Bioethics Commission member Dr. Daniel Sulmasy, Kilbride-Clinton Chair in Medicine and Ethics at the University of Chicago. The interview was conducted by Hillary Wicai Viers, a former Communications Director with the Bioethics Commission staff. Dr. Sulmasy discussed the importance of looking to past commissions, the legacy of the current Bioethics Commission, and the pressing ethical issues that we could face in the future. Regarding the importance of looking to past bioethics commissions, Dr. Sulmasy said “The past is applicable because many of the most basic ethical questions are perennial. We may encounter new problems, but the most fundamental questions about human finitude, the meaning of human progress, the role of balancing relief of suffering versus other ethical principles, questions of cost, and justice are always with us.”

Episode 10, and all of the other Ethically Sound episodes, is now available on our website, as well as on our SoundCloud, YouTube and iTunes pages. Listeners can follow the podcast using #EthicallySound or by following us on Twitter @bioethicsgov. Stay tuned for our upcoming educational resource, a set of discussion questions to accompany the Ethically Sound series that can be used in a classroom or seminar setting. We welcome comments and feedback at info@bioethics.gov.

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Ethically Sound Episode 6: New Directions https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/10/17/ethically-sound-episode-6-new-directions/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/10/17/ethically-sound-episode-6-new-directions/#respond Mon, 17 Oct 2016 15:00:43 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=2012 The Presidential Commission for the Study of Bioethical Issues bioethics_twitter-v3-08(Bioethics Commission) has
released the sixth episode, “New Directions“, in its new
podcast series Ethically Sound.  This podcast series is dedicated to bringing the Bioethics Commission’s body of work to a broad audience. The Bioethics Commission, established in 2009 by President Bara
ck Obama, has produced 10 reports, each of which focuses on key ethical considerations surrounding a particular topic. Today’s episode is based on the Bioethics Commission’s first report, New Directions: The Ethics of Synthetic Biology and Emerging Technologies.

New Directions was written in response to a charge from President Obama, after the announcement that researchers at the J. Craig Venter Institute had created the world’s first self-replicating synthetic genome in a bacterial cell. This news resulted in intense media coverage and hyped claims about the implications of this research. President Obama asked the Bioethics Commission to review the developing field of synthetic biology and to identify appropriate ethical boundaries that would both maximize public benefits and minimize risks. The Bioethics Commission considered a diverse range of perspectives on the direction and implications of synthetic biology throughout its public deliberations. Taking into consideration both the tremendous promise and the potential risks that could arise from developments in synthetic biology, the commission put forth 18 recommendations that outline important ethical considerations for synthetic biology. The recommendations include a call for increased federal oversight of research in synthetic biology, and a recommendation for incorporating ethics training for researchers in fields such as engineering and materials science, who might become involved in synthetic biology research.

The podcast opens with a narrative from Eleonore Pauwels, Senior Program Associate within the Science and Technology Innovation Program at the Woodrow Wilson Center. Ms. Pauwels shared her reaction to the announcement from the Venter Institute, and her perspective on how ethical issues would need to be addressed in this emerging technology. She said, “Today we still face an unresolved question: How do we develop a culture of inclusive public deliberation and decision-making that could guide integration of synthetic biology and all new technologies into society?”

The podcast also includes an interview with the Vice Chair of the Bioethics Commission and former President of Emory University, Dr. James Wagner. Hillary Wicai Viers, former Communications Director with the Bioethics Commission staff, conducted the interview. Dr. Wagner discussed the relevance of the commission’s report for current and future developments in synthetic biology, and how this first report set the tone for the rest of the commission’s body of work. Dr. Wagner noted that the ethical principles established in this report were foundational to subsequent projects, as well. He said, “We found ourselves in subsequent reports also recommending that there needs to be greater education in the area of bioethics, and education of our public to understand the current state of the art. We found ourselves coming back to those [ethical principles] over and over again in subsequent works that we did, whether it was work in neuroscience or work in genome sequencing.”

Episode 6 is now available on our website, as well as on our SoundCloud, YouTube and iTunes pages. In addition to this episode, listeners can access the first five episodes of Ethically Sound. Listeners can follow the podcast using the hashtag #EthicallySound or by following us on Twitter @bioethicsgov. Stay tuned for the seventh episode in our series, “Moral Science,” which will be available on October 24, 2016. We welcome comments and feedback at info@bioethics.gov.

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Ethically Sound Episode 4: Privacy and Progress https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/10/03/ethically-sound-episode-4-privacy-and-progress/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/10/03/ethically-sound-episode-4-privacy-and-progress/#respond Mon, 03 Oct 2016 14:00:13 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1988 The Bioethics Commission has released the fourth episode, “Privacy and Progress,” in its new podcast series Ethically Sound.  The series is dedicated to bringing the Bioethics Commission’s body of work to a broad audience. The Bioethics Commission, established in 2009 by President Barack Obama, has produced 10 reports, each of which focuses on key ethical considerations surrounding a particular topic. Today’s episode focuses on the Commission’s report Privacy and Progress in Whole Genome Sequencing.

Privacy and Progress addresses complex privacy concerns related to a powerful and newly accessible technology. Whole genome sequencing has evolved from an ambitious scientific aspiration to a readily available technique with tremendous potential to advance clinical care and medical research. The extent of highly personal information collected through whole genome sequencing raised concerns about protecting the privacy of individuals whose genomes were sequenced. In addressing the ethical dilemmas surrounding whole genome sequencing, the Commission considered the potential benefits of whole genome sequencing, as well as concerns related to privacy protection. Throughout its public deliberations, the Commission considered a variety of perspectives on the issue. In its report, the Commission presented a series of recommendations regarding access to and use of genetic information, including a recommendation that federal and state governments ensure a consistent set of privacy protections for genetic information.

The podcast opens with a narrative from Retta Beery, a mother and patient advocate who shared the story of her children with the Commission. Ms. Beery’s twin children, Noah and Alexis, suffered from a debilitating condition for the majority of their childhood. Initially diagnosed with cerebral palsy, Ms. Beery conducted her own research and discovered that her children needed to be treated with supplements of the amino acid levodopa (L-Dopa). However, even with the supplements, Ms. Beery’s daughter, Alexis, continued to suffer from a periodic inability to breathe, which sometimes required trips to the emergency department. When Noah and Alexis were 14, Ms. Beery had their genomes sequenced, which led to the discovery of a genetic mutation. Only then were physicians able to determine their precise diagnosis and appropriate treatment plan. After this discovery, Ms. Beery said “Alexis was back to running and living a full life. Whole genome sequencing, literally, saved her life.”

The podcast also includes an interview with Commission member Dr. Anita Allen, the Henry R. Silverman Professor of Law and Professor of Philosophy at the University of Pennsylvania. Hillary Wicai Viers, former Communications Director with the Bioethics Commission staff, conducted the interview. Dr. Allen discussed the impact that the report has had since its released, and how the diverse backgrounds of the Bioethics Commission members facilitated deliberations about the tension between the right to privacy and the immense potential progress that could result from whole genome sequencing. Regarding the Commission’s diverse backgrounds, Dr. Allen said, “This wide variety of backgrounds meant that some of the questions asked were not just the obvious ones about how data can be protected, but also deep, deep understandings and different understandings of why data should be protected.”

Episode 4 is now on our website, as well as on our SoundCloud, YouTube and iTunes pages. In addition to this episode, listeners can access the first three episodes “Safeguarding Children,”Ethics and Ebola,” and “Anticipate and Communicate.” Listeners can follow the podcast using the hashtag #EthicallySound or by following us on Twitter @bioethicsgov. Stay tuned for the fifth episode in our series, “Gray Matters,” which will be available on October 10, 2016. We welcome comments and feedback at info@bioethics.gov.

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Bioethics Commission Staff Holds Multidisciplinary Educational Materials Webinar https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/04/28/bioethics-commission-staff-holds-multidisciplinary-educational-materials-webinar/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/04/28/bioethics-commission-staff-holds-multidisciplinary-educational-materials-webinar/#respond Mon, 28 Apr 2014 15:06:57 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1281 The Presidential Commission for the Study of Bioethics Issues (Bioethics Commission) recently hosted a webinar entitled “Multidisciplinary Implementation of Bioethics Commission Education Materials.” In the hour-long presentation, three Bioethics Commission staff members (including myself) demonstrated how the Commission’s educational materials can be used in three different settings: a philosophy course, a biology course, and a law school lunch-and-learn.

Research Analyst Misti Ault Anderson opened the session by introducing the Bioethics Commission and its commitment to education throughout its work, and highlighting recommendations that call for education in three of its past reports. In addition, Anderson demonstrated how to access all of the educational materials, which are available for free download and use at Bioethics.gov.

Next, Senior Policy and Research Analyst Karen Meagher demonstrated how to use two of the Bioethics Commission’s modules—Informed Consent Background and Informed Consent in Privacy and Progress—in an existing undergraduate philosophy course. Meagher showed how an existing syllabus could be revised to include lectures and discussion about informed consent in genetic and genomic research.

Then, Anderson demonstrated how to use the same two educational modules in two kinds of undergraduate science classes—an introductory biology class and an upper-level research seminar. She highlighted the versatility of the modules, showing that teachers can adapt the materials to fit the level of the students.

Finally, I demonstrated the use of the same two modules to build a law school lunch-and-learn training session on informed consent for genetic research. I emphasized the importance of teaching ethics to law students and showed that the pedagogical materials are not stand-alone documents; instead, instructors can access additional materials from the Bioethics Commission, including its reports, to design workshops, exercises, and discussion questions.

A robust discussion session followed, with attendees from institutions across the country asking insightful questions. Participants asked about using the modules in other settings, including in secondary school, in a medical pharmacology course, and for clinical research staff orientation. In addition, the panelists answered questions about the importance of the Bioethics Commission’s educational materials and offered tips regarding how to get students and teachers interested in learning about bioethics.

A recording of the session is now available on the Bioethics Commission’s YouTube channel, bioethicsgov. There, you can also find a video of Commission Members discussing the importance of bioethics education, and another webinar hosted by staff on advancing bioethics education. All of the Bioethics Commission’s educational materials are available for free use at http://Bioethics.gov/education.

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Bioethics Commission to Host Webinar Demonstrating Educational Modules https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/04/09/bioethics-commission-to-host-webinar-demonstrating-educational-modules/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/04/09/bioethics-commission-to-host-webinar-demonstrating-educational-modules/#respond Wed, 09 Apr 2014 15:36:49 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1232 The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) is committed to developing resources to improve bioethics education. On Thursday, April 24, 2014 the Bioethics Commission will hold a public webinar demonstrating and discussing how the educational modules developed by the Commission and based on Commission reports can be applied in a variety of traditional and non-traditional educational settings.

The Bioethics Commission’s topic-based educational modules are designed to be flexible to support multiple approaches and subject areas. During the webinar, participants will see how one of these topics might be taught in three different educational settings: a philosophy course, an undergraduate science course, and a law school lunch-and-learn venue.

Presenters will draw from the Informed Consent Background and Informed Consent in Privacy and Progress in Whole Genome Sequencing modules, all of which are available at www.bioethics.gov/education. They will demonstrate how these materials can be adapted to fit into science and law curricula and be used to update a syllabus for a course covering philosophical aspects of bioethics.

“The Bioethics Commission is committed to ensuring that future scientists, public health professionals, and health care providers are able to identify ethically challenging situations, to make ethically sound decisions in response to these situations, and to seek and receive the support they need to do so,” said Executive Director Lisa M. Lee, Ph.D., M.S.

The Bioethics Commission continues to develop educational materials that can be incorporated into education and training at all levels. Educational materials are posted to www.bioethics.gov/education as they become available.

For more information and to register for the April 24 webinar visit http://node/3454.

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Bioethics Commission staff discuss the multidisciplinary implementation of Commission education modules at APPE https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/03/04/bioethics-commission-staff-discuss-the-multidisciplinary-implementation-of-commission-education-modules-at-appe/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/03/04/bioethics-commission-staff-discuss-the-multidisciplinary-implementation-of-commission-education-modules-at-appe/#respond Tue, 04 Mar 2014 18:18:10 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1186 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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Informed Consent in the Bioethics Commission’s Work https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/02/18/informed-consent-in-the-bioethics-commissions-work/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2014/02/18/informed-consent-in-the-bioethics-commissions-work/#respond Tue, 18 Feb 2014 18:37:43 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1162 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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Promoting “Privacy and Progress” at APHA https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/11/04/promoting-privacy-and-progress-at-apha/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/11/04/promoting-privacy-and-progress-at-apha/#respond Mon, 04 Nov 2013 16:09:19 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1022 After returning from the American Society for Bioethics and Humanities (ASBH) annual meeting in Atlanta last week, Kayte Spector-Bagdady, Associate Director at the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission), is gearing up for another presentation at the American Public Health Association (APHA) meeting in Boston this week. As part of the panel “Ethics of Privacy and Health Data,” Spector-Bagdady will present on Tuesday, November 5th on a panel starting at 10:30 a.m. Her talk, “Enabling Privacy and Progress: Protecting Individual Participants in Big Data,” will focus on the ethical considerations of storing and sharing large amounts of genomic data in biobanks.

Released in October 2012, the Bioethics Commission report Privacy and Progress in Whole Genome Sequencing addresses the pressing privacy and data access issues raised by the advancement of low-cost whole genome sequencing. Scientists rely on human genome sequencing data to explore potential treatments for genetic diseases; however, individuals are less likely to consent to their genetic data being used for research without assurance that their interests in privacy are respected and secured.

“The goal of all of the Bioethics Commission’s reports is to encourage further deliberation and application of the ethical paradigms discussed. Talking about how Privacy and Progress can be applied specifically to the ‘big data’ context helps encourage this conversation,” Spector-Bagdady said.  In its report, the Bioethics Commission specifically urged federal and state governments to develop a process for ensuring a consistent floor of protections covering whole genome sequence data regardless of how they were obtained. It recommended these policies protect individual privacy by prohibiting unauthorized whole genome sequencing without the consent of the individual.

The Bioethics Commission also recently released pedagogical materials to promote bioethics scholarship in educational and professional settings. Two of these modules use issues in whole genome sequencing to demonstrate the importance of informed consent and community engagement when human subject data is involved.

Find out more at APHA tomorrow!

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See you at APHA in Boston https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/10/30/see-you-at-apha-in-boston/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/10/30/see-you-at-apha-in-boston/#respond Wed, 30 Oct 2013 14:32:18 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=994 The Presidential Commission for the Study of Bioethical Issues (the Bioethics Commission) will be participating in the 141st Annual Meeting and Exposition of the American Public Health Association in Boston, Mass. We look forward to seeing you at the following sessions:

Panel Session – Enumerating Ethical Considerations of Medical Countermeasure Research with Children (3442.0) at 4:30 p.m., Monday, November 4

Moderated by Bioethics Commission Associate Director Kayte Spector-Bagdady, J.D., M. Bioethics

                          Ethical Considerations for Medical Countermeasure Research with Children
                          Bioethics Commission Executive Director Lisa M. Lee, Ph.D., M.S.

                          Conducting Ethical Pre-event Medical Countermeasure Trials with Children
                          Bioethics Commission Associate Director Michelle Groman, J.D.

                          Conducting Ethical Post-event Medical Countermeasure Trials with Children
                          Commission Member Christine Grady, M.S.N, Ph.D.

Panel Session – Ethics of Privacy and Health Data (4105.0) at 11:10 a.m., Tuesday, November 5

                          Enabling Privacy and Progress: Protecting Individual Participants in Big Data
                          Bioethics Commission Associate Director Kayte Spector-Bagdady, J.D., M. Bioethics

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See you at ASBH in Atlanta https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/10/23/see-you-at-ashb-in-atlanta/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/10/23/see-you-at-ashb-in-atlanta/#respond Wed, 23 Oct 2013 21:10:42 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=982 The Presidential Commission for the Study of Bioethical Issues (the Bioethics Commission) will be participating in the American Society for Bioethics and Humanities (ASBH) 15th Annual Meeting in Atlanta, Ga. We look forward to seeing you at the following sessions:

Plenary Session, Friday, 9:15 a.m.
A Conversation with Amy Gutmann, Chair, Ph.D., Presidential Commission for the Study of Bioethical Issues

Panel Session (324), Saturday, 11:45 a.m.
Post- “Privacy and Progress”: Emerging Legal and Ethical issues in Whole Genome Sequencing with Senior Policy and Research Analyst Elizabeth R. Pike, J.D., LL.M; Associate Director Kayte Spector-Bagdady, J.D., M.Bioethics; and Research Analyst Nicolle K. Strand, J.D., M.Bioethics. Associate Director Michelle Groman will moderate.

Paper Session (345), History/Research Ethics, Saturday, 3:15 p.m.
“Something of an Adventure”: Postwar NIH Research Ethos and the Guatemala STD Experiments with Associate Director Kayte Spector-Bagdady, J.D., M.Bioethics

Panel Session (414), Sunday, 9:45 a.m.
Moral innovation in a Changing World: Ethically Researching Medical Countermeasures with Children with Associate Director Michelle Groman, .J.D.; Professor of Philosophy David DeGrazia, Ph.D., George Washington University; Lead Medical Officer Robert M. Nelson, M.D., Ph.D., Food and Drug Administration. Executive Director Lisa M. Lee will moderate.

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