Elizabeth Pike – 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 Using the Bioethics Commission’s Meeting to Educate About Democratic Deliberation https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/04/18/using-the-bioethics-commissions-meeting-to-educate-about-democratic-deliberation/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/04/18/using-the-bioethics-commissions-meeting-to-educate-about-democratic-deliberation/#respond Mon, 18 Apr 2016 18:15:53 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1817 In the Bioethics Commission’s upcoming work focusing on deliberation and education, the Bioethics Commission describes the principles inherent in successful democratic deliberations. These principles include maintaining mutual respect and providing clear reasons for a position with the goal of arriving at a shared solution.

The Bioethics Commission puts these principles into practice in their own deliberations conducted at public meetings. Since July 2010, the Bioethics Commission has conducted 23 meetings across the country during which they have deliberated about topics and reached agreement on recommendations that are published in their nine reports.

Dr. Rachel Fink, professor of biological sciences at Mount Holyoke College in Massachusetts, brought eight of her students to Washington, DC to observe the Bioethics Commission deliberation in action on November 17, 2015. For many of the students, this provided their first opportunity to observe democratic deliberation firsthand—an opportunity that many of the students found educational.

As one student observed:

Each commissioner had started out in a specific profession and had knowledge in certain subjects, yet they all sat together diplomatically, accepting, critiquing, and refining each other’s ideas and points.

A second student reflected:

I thought the meeting would be a heated debate about an issue of their choice with strong opponents to each side. I expected it would take them awhile, maybe even a few meetings, to agree on a position, and even then the decision wouldn’t be perfect. However, I was incredibly impressed with how well each panelist presented themselves in speech and in logic supporting their individual perspectives, taking into account a number of pros and cons, and how easily they were able to agree with a level head.

Observing democratic deliberation in practice, such as the deliberations carried out by the Bioethics Commission, can serve to educate future deliberators about the merits of the practice and foster appreciation for all that can be achieved through deliberation. In fact, one student noted that the deliberations:

[L]eft an impact on me because I have never had an interest in pursuing politics or policy as I assumed the fields were more cutthroat, more about how the individual can get ahead without thinking about how their decisions affect others. However, after … observing how composed and productive the commission was in a few short hours, I am hoping to someday consider using my advanced degree in science to benefit the community from a political standpoint.

Source: Student reflections provided by Dr. Rachel Fink

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Bioethics in Action: Bringing Bioethics Deliberation into the Classroom https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/02/17/bioethics-in-action-bringing-bioethics-deliberation-into-the-classroom/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2016/02/17/bioethics-in-action-bringing-bioethics-deliberation-into-the-classroom/#respond Wed, 17 Feb 2016 16:44:00 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1794 This is the first post in our “Bioethics in Action” series of blogs. Check back here for more posts in this series.

As the Bioethics Commission continues its work on deliberation and education, we wanted to highlight an approach situated at the intersection of deliberation and bioethics education. Dr. Rachel Fink, a developmental biologist and professor of biological sciences at Mount Holyoke College, has worked hard and thought creatively about how best to incorporate the ethical and policy dimensions of pressing scientific issues into her basic science courses.

Dr. Fink’s interest in incorporating these ethical and policy dimensions was first piqued when headlines reported the cloning of “Dolly the Sheep.” As Dr. Fink stated, “I ran into class with the headline from that New York Times saying ‘This is one of the most exciting things! Let’s talk about it.’” Over time, Dr. Fink’s approach to incorporating bioethical issues into classroom discussions grew more systematic.

As detailed in an article published in Cell Biology Education, over the course of a semester, Dr. Fink leads a group of seniors in studying the ethical and policy implications of a particularly challenging scientific issue. Past topics have ranged from cloning to embryonic stem cells—in other words, the issues that, as Dr. Fink notes, “bring up conflicts in all thoughtful members of our society.” Dr. Fink has each student in her upper-level course take on the persona of a national or international figure involved in considerations of the particular issue. At the end of the semester, the upper-level students stage a mock deliberation for introductory biology students, presenting a wide range of perspectives on the issue under consideration. In past semesters, upper-level students have taken on the personae of the current Bioethics Commission members and members of the former President’s Council on Bioethics (2001-2009).

A critical advantage of assigning personae to the different students is that it allows for a range of diverse views to be presented. Per Dr. Fink, “Many students have a kind of natural discomfort with having to have their own views put forward as part of the conversation. By taking on the persona of someone else, you can have a thoughtful debate about the pros and cons of something. And yet, nobody’s ego is on the line.” Letting students choose their personae also enables students to explore viewpoints that are distinct from their own: “Some students pick someone who lines up exactly with their views, and others will say, ‘I’m completely liberal, I want to portray the most conservative voice I can find because I’ve never read that stuff. I want to really read their arguments.’”

For the introductory biology students who observe the mock deliberation, the experience is tremendously beneficial. As Dr. Fink observes, “The intro students are used to having adults talk to them and at them and in front of them all the time. By having students as the experts, they really respond to that.” One student summed up her experience observing the mock deliberation as follows: “Normally when you hear debates in this subject, it is either wrong or right to support this, that’s it. But I gathered a really clear understanding of the spaces in between, which made my opinions of the matter more clear.”

In fact, the experience of observing the mock deliberation can be so powerful that many of the students applying to join the upper-level course list their experience observing the mock deliberation as a key factor motivating their decision to enroll. Bringing bioethics deliberation into the classroom is a potentially powerful tool in getting students thinking about and engaged in bioethical issues.

Fink and co
Image: Dr. Fink and Mount Holyoke students at Meeting Twenty-Three of the Bioethics Commission in Arlington, VA (11/17/2015)

Sources: Fink, R.D.. (2002). Cloning, stem cells, and the current national debate: Incorporating ethics into a large introductory biology course. Cell Biology Education, 1(4), 132-144. Interview with Dr. Rachel Fink conducted by E.R. Pike on January 13, 2016.

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New Educational Module from the Bioethics Commission on Privacy in Ethics and Ebola Now Available https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/12/10/new-educational-module-from-the-bioethics-commission-on-privacy-in-ethics-and-ebola-now-available/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/12/10/new-educational-module-from-the-bioethics-commission-on-privacy-in-ethics-and-ebola-now-available/#respond Thu, 10 Dec 2015 17:15:57 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1770 The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has posted a new educational module on its website, Bioethics.gov. This module on privacy focuses on the Bioethics Commission’s work in Ethics and Ebola: Public Health Planning and Response (Ethics and Ebola). This new privacy module on Ethics and Ebola adds to the privacy resources already produced by the Bioethics Commission. Additional materials on privacy include a background module and a module that accompanies the Bioethics Commission’s report Privacy and Progress in Whole Genome Sequencing. Other topics covered by the Bioethics Commission’s educational modules include community engagement, compensation for research-related injury, informed consent, research design, and vulnerable populations.

The Privacy in Ethics and Ebola module briefly introduces the concept of privacy as it relates to the collection, use, and sharing of biospecimens during public health emergencies; sets forth the ethical principles that guide consideration of the privacy issues raised by the collection, use, and sharing of biospecimens during public health emergencies; and describes the privacy protections, including anonymization and de-identification, available for biospecimens that are collected, used, and shared.

The educational modules produced by the Bioethics Commission are based on the contemporary ethical issues addressed by the Commission, and are designed to provide instructors with foundational information, ethical analysis, discussion questions, problem-based learning scenarios, exercises, and additional resources to support ethics education and the integration of bioethical analysis into coursework across disciplines.

All Bioethics Commission educational materials are free and available at http://www.bioethics.gov/education. The Bioethics Commission encourages feedback on its materials at education@bioethics.gov.

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Compensating Participants Injured in Pediatric Medical Countermeasure Research https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/05/14/compensating-participants-injured-in-pediatric-medical-countermeasure-research/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2013/05/14/compensating-participants-injured-in-pediatric-medical-countermeasure-research/#respond Tue, 14 May 2013 14:39:29 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=679 In its recent report, Safeguarding Children: Pediatric Medical Countermeasure Research, the Presidential Commission for the Study of Bioethical Issues (the Bioethics Commission) revisited the issue of compensation for research-related injury—an issue first addressed in its December 2010 report, Moral Science: Protecting Participants in Human Subjects Research.

In Safeguarding Children, the Bioethics Commission reaffirmed the conclusion reached in Moral Science that those “harmed in the course of human subjects research ought not individually bear the costs of care required to treat qualified harms resulting directly from that research.” The Bioethics Commission noted that the principles of justice—which requires that the benefits and burdens of research be distributed equitably—and beneficence and respect for persons—which together require that ameliorable risks to participants be minimized—support compensating injured research participants.

In the context of pediatric medical countermeasure (MCM) research, the ethical case for compensation is particularly acute. Children who enroll in pediatric MCM research cannot legally or ethically provide informed consent for participation. These children could also be asked to bear greater risk than ordinarily permitted in pediatric research—although no more than a minor increase over minimal risk—for the benefit of children exposed to a potential future attack. For these reasons, children injured as a result of their participation in pediatric MCM research should receive necessary medical care and appropriate compensation for their injuries. Reviewers of pediatric MCM research have a corresponding obligation to ensure that researchers have a plan to treat or compensate those participants who are injured.

As acknowledged by the Bioethics Commission in Moral Science, there is, as yet, no overarching federal policy to ensure that all injured research participants receive treatment or compensation. There are, however, two systems that provide some compensation for research-related injuries, although they do not provide sufficient protection in the pediatric MCM context. The first system is the National Vaccine Injury Compensation Program, a national system that compensates those injured by vaccines listed in the Vaccine Injury table (available here) or that are recommended by the U.S. Centers for Disease Control and Prevention for routine administration. Most MCM vaccines are not listed in the Vaccine Injury Table, and not all MCMs are vaccines. Injured pediatric MCM research participants would therefore not be eligible for compensation under this program.

A second, and potentially more suitable, alternative is the Public Readiness and Emergency Preparedness (PREP) Act, which provides limited access to compensation for those injured as a result of receiving an MCM. The PREP Act permits those who suffer “serious physical injury or death” to recover from the “Covered Countermeasure Process Fund,” a pool of funds that comes into existence once the Secretary of HHS declares an emergency. Those who suffer minor injuries, however, or those whose injuries arise after the expiration of the PREP Act’s one year statute of limitations, will be unable to receive compensation.

Ultimately, the Bioethics Commission concluded that, in both pre- and post-event pediatric MCM research, those conducting research must ensure that there is a sufficient treatment and compensation plan in place so that the costs of any resulting harm or injury do not fall on pediatric research participants or their families.

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