Through the use of dramatic narratives, The Drama of DNA brings to life the complexities raised by the application of genomic technologies to health care and diagnosis. This creative, pedagogical approach shines a unique light on the ethical, psychosocial, and policy challenges that emerge as comprehensive sequencing of the human genome transitions from research to clinical medicine. Narrative genomics aims to enhance understanding of how we evaluate, process, and share genomic information, and to cultivate a deeper appreciation for difficult decisions encountered by health care professionals, bioethicists, families, and society as this technology reaches the bedside. This innovative book includes both original genomic plays and theatrical excerpts that illuminate the implications of genomic information and emerging technologies for physicians, scientists, counselors, patients, blood relatives, and society. In addition to the plays, the authors provide an analytical foundation to frame the many challenges that often arise.
Foreword Eric D. Green, MD, PhD
Preface Karen H. Rothenberg & Lynn W. Bush
Chapter 1 SETTING THE GENOMIC STAGE:
Why Genomics, Why Narratives, Why Now?
Exploring Ethical, Psychosocial & Policy Challenges of Next-Gen Sequencing
Part I Narrative Genomics: Exploring Process in Context
Chapter 2 ANTICIPATING THE FUTURE:
Genomic Protocols & Ethics Consultations
Scene I The IRB Meeting
Scene II The Genomic Advisory Committee
Online Play "Imagining a Genomic Crystal Ball"
Chapter 3 INFORMING THE FUTURE:
The Process of Consent & Disclosure of Genomic Information
Scene I The Informed Consent Process
Scene II The Return of Genomic Findings
Online Play "It's Not That Simple" & "It's So Complicated"
Chapter 4 REFRAMING AN "OPEN FUTURE":
The Shifting Landscape From NBS to NBSeq
Scene I The Paradoxes of NBSeq
Scene II The Practical Concerns in "Pandora's Box"
Online Play "The Paradoxes in Pandora's Box"
Part II Integrating Narrative Genomics: A Case Study Drama
Chapter 5 RECONCEPTUALIZING THE PAST, PRESENT & FUTURE:
Next Gen Sequencing - "What's Next?!"
Scene I The IRB Deliberation
Scene II The Informed Consent Process
Scene III The Clinical Ethics Consultation
Scene IV The Return of Genomic Findings
Online Play "What's Next?!"
Part III Narrative Genomics on Stage: DNA, Society & Theatre
Chapter 6 DRAMATIZING THE PAST, PRESENT & FUTURE:
Theatrical Narratives from Genetics to Genomics
Section I The Theatrical Double Helix & "Chromozones"
Section II Mapping & Manipulating Fate
Section III A Genomic Crystal Ball in the Post-Mapping Decade
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Lynn Bush, PhD, MS, MA is on the faculty of Pediatric Clinical Genetics at Columbia University Medical Center, a faculty associate at their Center for Bioethics, and serves as an ethicist on pediatric and genomic advisory committees for numerous academic medical centers and professional organizations. Dr. Bush has an interdisciplinary graduate background in clinical and developmental psychology, bioethics, genomics, public health, and neuroscience that informs her research, writing, and teaching on the ethical, psychological, and policy challenges of genomic medicine and clinical research with children, and prenatal-newborn screening and sequencing.
Karen H. Rothenberg, JD, MPA serves as Senior Advisor on Genomics and Society to the Director, National Human Genome Research Institute and Visiting Scholar, Department of Bioethics, Clinical Center, National Institutes of Health. She is the Marjorie Cook Professor of Law, Founding Director, Law & Health Care Program and former Dean, University of Maryland Francis King Carey School of Law and Visiting Professor, Johns Hopkins Berman Institute of Bioethics. Professor Rothenberg has served as Chair of the Maryland Stem Cell Research Commission, President of the American Society of Law, Medicine and Ethics, and has been on many NIH expert committees, including the NIH Recombinant DNA Advisory Committee.