This document outlines a proposal for a 1 1/2 day symposium in March, 2012, administered by the University of Pennsylvania Department of Continuing Medical Education and hosted by the Division of Cardiology of the Children's Hospital of Philadelphia, the Cardiovascular Medicine Division of the University of Pennsylvania and the Penn Center for Bioethics on the topic of Ethics and Policy Challenges in Pediatric and Adult Congenital Heart Disease. This topic has received little attention, yet the growing number of patients surviving with congenital heart disease, coupled with the increasing number, complexity and cost of treatments for these patients makes this topic timely. The general aims of this conference include the following: 1. Convene a multidisciplinary panel of nationally-known experts in the fields of Pediatric Congenital Heart Disease, Adult Congenital Heart Disease and Bioethics to identify and discuss the most important ethical issues in congenital heart disease. 2. Provide a forum where clinicians, ethicists, chaplains, social workers, public health workers and trainees in each of these fields can discuss current and future developments in the ethics of congenital heart disease management. 3. Enable and encourage participants to address these issues in research endeavors, quality improvement initiatives and policy development and implementation at their home institutions. 4. Generate a conference proceedings document to be published in an ethics journal, and a position paper outlining an agenda for research, quality improvement initiatives and policy development in ethics of congenital heart disease, to be published in cardiology journal. This symposium will employ a combination of traditional and unique formats to achieve the objectives, including brief lectures, case presentations with ethical analysis, debates, panel discussions, small group sessions and one-on-one conversational interviews at the end of each day. These formats will emphasize discussion and audience participation, and the final session will involve small groups in which attendees will share specific plans to apply what they have learned at the conference. Facilitation of interdisciplinary discussion and participation of trainees will be primary focuses of the program. We will offer three trainee travel scholarships and reduced tuition rates for clinicians from underserved health clinics. We anticipate that this conference will serve as the foundation for clinical guidelines and policy development, to be facilitated by future conferences on this and other topics in cardiovascular ethics.
The topic of ethics and congenital heart disease increasing in importance with the growing number of congenital heart disease patients surviving to adulthood, thanks to dramatic advances in diagnosis and treatment. But these advances have created their own dilemmas. Clinical and basic science research and development often advance faster than ethical discourse, and there is a need to analyze the ethics of research methods and the trajectory of new therapy development.
