The Drama of DNA: Narrative Genomics

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 at the 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.

Contents ; 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" ; Additional Questions ; 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" ; Additional Questions ; 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" ; Additional Questions ; 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?!" ; Additional Questions ; 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 ; Additional Questions ; REFERENCES