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2014 Pediatric Bioethics Conference

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The Treuman Katz Center for Pediatric Bioethics hosted its 10th annual pediatric bioethics conference on July 18 and 19, 2014, in Seattle. PDFs of speaker biographies and slides and videos of presentations appear below.

2014 Bioethics Conference Introduction

New Opportunities, New Challenges: Exploring the Ethical Boundaries of Pediatric Research

In July 2005, Seattle Children’s hosted its first annual pediatric bioethics conference, entitled "Current Controversies in Pediatric Research Ethics". Now, a decade later, we revisit the topic as we focus on the changing and challenging world of pediatric bioethics – "New Opportunities, New Challenges: Exploring the Ethical Boundaries of Pediatric Research". An impressive lineup of speakers will examine a wide range of questions and issues:

  • Parents of seriously ill children are often desperate for new therapies, even if in early phase trials. Is truly voluntary consent possible in such a situation?
  • Social media allows researchers to “eavesdrop” on adolescent behavior. Should there be constraints on this type of investigation?
  • Is it ever acceptable to conduct research in developing countries that would be considered inappropriate in the United States?
  • If hospitals set up biobanks for research, what is needed to ensure public trust?

2014 Pediatric Bioethics Conference Presentations

Friday, July 18

Research in the Developing World: Different Ethics or Different Facts? 
Norman Fost, MD, MPH
Biography
Presentation slides
Video

The Role of Ethics and Ethicists in International Case Studies: A Reflective Equilibrium Approach
Lainie Friedman Ross, MD, PhD
Biography
Presentation slides
Video

A Conversation About Ethical Challenges in Pediatric Research 
Douglas Diekema, MD, MPH, moderator
Alexander Capron, LLB; Norman Fost, MD, MPH; Steven Joffe, MD, MPH; Nancy Kass, ScD; P. Pearl O’Rourke, MD; Lainie Friedman Ross, MD, PhD
Video

The SUPPORT Trial and Ethical Issues Raised by Comparative Effectiveness Trials 
Nancy Kass, ScD
Biography
Presentation slides
Video

Learning Healthcare Systems: Ethically Integrating Research into Pediatric Care
Steven Joffe, MD, MPH
Biography
Presentation slides
Video

The Triumph of the Human Spirit: From Auschwitz to Forgiveness
Eva Mozes Kor
Biography
Video

Saturday, July 19

Beyond All or None: Return of Secondary Results from Research and Clinical Exome and Whole Genome Sequencing
Holly Tabor, PhD
Biography
Presentation slides
Video

Biobanking: Perks, Promises and Perplexing Problems
P. Pearl O’Rourke, MD
Biography
Presentation slides
Video

Young Patients, Age-Old Issues
Alexander Capron, LLB
Biography
Presentation slides
Video

Breakout Sessions: Submitted Presentations and Discussions 

Recommendations from the Presidential Commission for the Study of Bioethical Issues: Safeguarding Children in Emergencies through Ethical Pediatric Research
Presented by Michelle Groman, JD
Biography
Presentation slides
Video
Session moderator: Maureen Kelley, PhD
Biography

Minding the Shop When the House Takes a Cut: Institutional Conflicts of Interest in Research
Presented by Jeff Sconyers, Esq.
Biography
Presentation slides
Session moderator: Douglas Opel, MD, MPH
Biography

Family Participation in a Communication and Support Intervention Study in the PICU
Presented by Erica Bourget, MPH
Biography
Presentation slides

Travelling the World in Pursuit of Experimental Therapy for Juvenile Primary Amyotrophic Lateral Sclerosis
Presented by Jessica Moore, DHCE
Biography
Presentation slides
Session moderator: Lainie Friedman Ross, MD, PhD

Drawing Adolescents In: Can Comics Improve the Quality of Assent?
Presented by Leah Eisenberg, JD, MA
Biography
Presentation slides

More Involved Than What I Thought: Findings from an Informed Public Engagement About a Proposed Birth Cohort Study
Presented by Merle Spriggs, PhD
Biography
Presentation slides
Session moderator: P. Pearl O’Rourke, MD

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