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BIOETHICS for EVERY GENERATION Deliberation and Education in Health, Science, and Technology

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BIOETHICS for EVERY GENERATION Deliberation and Education in Health, Science, and Technology BIOETHICS FOR EVERY GENERATION Deliberation and Education in Health, Science, and Technology May 2016 BIOETHICS FOR EVERY GENERATION Deliberation and Education in Health, Science, and Technology Washington, D.C. May 2016 http://www.bioethics.gov Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology ABOUT THE PRESIDENTIAL COMMISSION FOR THE STUDY OF BIOETHICAL ISSUES The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) is an advisory panel of the nation’s leaders in medicine, science, ethics, religion, law, and engineering. The Bioethics Commission advises the President on bioethical issues arising from advances in biomedicine and related areas of science and technology. The Bioethics Commission seeks to identify and promote policies and practices that ensure scientific research, health care delivery, and technological innovation are conducted in a socially and ethically responsible manner. For more information about the Bioethics Commission, please see http://www. bioethics.gov. The use of trade names and commercial sources in this report is for identification only and does not imply endorsement. ii CONTENTS Letter of Transmittal to the President .................................................................................. iv Members of the Bioethics Commission ............................................................................... vi Bioethics Commission Staff and Consultants ................................................................... vii Acknowledgements .................................................................................................................. viii EXECUTIVE SUMMARY ..................................................................................................... 1 CHAPTER 1: Introduction.................................................................................................... 13 About This Report .............................................................................................................. 18 CHAPTER 2: Democratic Deliberation in Bioethics ...................................................... 21 At What Level Is Democratic Deliberation Useful? .................................................. 29 How Does Democratic Deliberation Work? ................................................................ 32 Begin with an Open Question and Consider Distinct Points of View ................... 33 Time the Deliberation for Maximum Impact ............................................................ 37 Invite Input from Experts and the Public ................................................................... 38 Foster Open Discussion and Debate ............................................................................ 40 Develop Detailed, Actionable Recommendations ...................................................... 41 Benefits of Democratic Deliberation.............................................................................. 42 Recommendations ..............................................................................................................44 CHAPTER 3: Bioethics Education ...................................................................................... 51 Education of Bioethicists .................................................................................................. 55 Bioethics Education ........................................................................................................... 55 Ethics Education ................................................................................................................. 56 Ethics Education Across the Lifespan ........................................................................... 57 Outside the Classroom.................................................................................................... 58 Primary School ................................................................................................................ 60 Secondary School ............................................................................................................. 61 Postsecondary School .......................................................................................................64 Professional and Graduate School ................................................................................66 Adult Bioethics Education in Public and Private Life ............................................. 68 Obstacles and Potential Solutions ................................................................................... 71 Mutual Reinforcement of Deliberation and Ethics Education ............................... 76 Recommendations .............................................................................................................. 77 CONCLUSION ........................................................................................................................ 89 ENDNOTES ............................................................................................................................. 93 APPENDICES ........................................................................................................................ 105 Appendix I: Steps for Deliberation ............................................................................... 106 Appendix II: List of the Bioethics Commission’s Educational Materials by Format .. 108 Appendix III: Guest Presenters to the Bioethics Commission Regarding Deliberation and Bioethics Education .....................................................................................................111 iii Presidential Commission for the Study of Bioethical Issues President Barack Obama The White House 1600 Pennsylvania Avenue, NW Washington, DC 20500 Dear Mr. President: On behalf of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission), we present to you Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology. In this legacy report, the Bioethics Commission focuses on two essential, mutually reinforcing missions—both practical and ethical—in our constitutional democracy: democratic deliberation and ethics education. These two tools can and should be used in tandem to address and resolve complex problems in developing health, science, and technology policy for our society. A primary mission of the Bioethics Commission has been to reimagine and reinvigorate the deliberative and educational roles of bioethics commissions in our democracy. Expanding the reach of our many in-person meetings, we have used online media tools for public outreach and input, and we have developed an unprecedented range of educational materials that help tailor our work to a variety of audiences. We undertook this report—which focuses on the future of bioethics deliberation and education—because of our nation's urgent ongoing need to foster civil and robust public discourse and civic involvement, especially in service of health, science, and technology policy that serves the common good. The Bioethics Commission approached each of its past projects with robust and reasoned deliberation, inviting presentations from a variety of experts and leaders, soliciting and receiving thoughtful input from the public, and conducting almost 200 hours of public discussion over seven years. In each 1425 New York Avenue, NW, Suite C-100, Washington, DC 20005 Phone 202-233-3960 Fax 202-233-3990 www.bioethics.gov iv of its reports, the Bioethics Commission has recommended improvements in ethics and bioethics education. The Bioethics Commission’s body of over 60 accompanying educational materials is already aiding in the integration of bioethics into classrooms and professional settings across our country, from high schools to hospitals and beyond. These educational materials reflect the Bioethics Commission's commitment to develop useful and accessible tools that enable and encourage all citizens to familiarize themselves with the most important developments in health, science, and technology. To inform this capstone report, the Bioethics Commission held four public meetings with deliberation and education as the focus, and heard from speakers with diverse backgrounds and perspectives. The Bioethics Commission also received many thoughtful public comments. In Bioethics for Every Generation, the Bioethics Commission offers eight recommendations to increase and improve the use of democratic deliberation and ethics education in order to enhance complex decision making in bioethics and health, science, and technology policy at all levels. Because education and deliberation are mutually reinforcing, we offer ideas for innovative ways to incorporate deliberation skills into ethics education, and to enhance deliberative processes by improving ethics education. The Bioethics Commission is honored by the trust you have placed in us and appreciative of the opportunity to serve you and our nation in this way. Sincerely, Amy Gutmann, Ph.D. James W. Wagner, Ph.D. Chair Vice Chair 1425 New York Avenue, NW, Suite C-100, Washington, DC 20005 Phone 202-233-3960 Fax 202-233-3990 www.bioethics.gov v Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology PRESIDENTIAL COMMISSION FOR THE STUDY OF BIOETHICAL ISSUES AMY GUTMANN, Ph.D., CHAIR President and Christopher H. Browne Distinguished Professor of Political Science and Professor of Communication, University of Pennsylvania JAMES W. WAGNER, Ph.D.,
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