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.
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.
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.
Inhaltsangabe
Contents Foreword Eric D. Green, MD, PhD Preface Karen H. Rothenberg and Lynn W. Bush Chapter 1 SETTING THE GENOMIC STAGE: Why Genomics, Why Narratives, Why Now? Exploring Ethical, Psychosocial and Policy Challenges of Next-Gen Sequencing Part I Narrative Genomics: Exploring Process in Context Chapter 2 ANTICIPATING THE FUTURE: Genomic Protocols and 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 and Disclosure of Genomic Information Scene I The Informed Consent Process Scene II The Return of Genomic Findings Online Play "It's Not That Simple" and "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 and 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 and Theatre Chapter 6 DRAMATIZING THE PAST, PRESENT and FUTURE: Theatrical Narratives from Genetics to Genomics Section I The Theatrical Double Helix and "Chromozones" Section II Mapping and Manipulating Fate Section III A Genomic Crystal Ball in the Post-Mapping Decade Additional Questions REFERENCES
Contents Foreword Eric D. Green, MD, PhD Preface Karen H. Rothenberg and Lynn W. Bush Chapter 1 SETTING THE GENOMIC STAGE: Why Genomics, Why Narratives, Why Now? Exploring Ethical, Psychosocial and Policy Challenges of Next-Gen Sequencing Part I Narrative Genomics: Exploring Process in Context Chapter 2 ANTICIPATING THE FUTURE: Genomic Protocols and 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 and Disclosure of Genomic Information Scene I The Informed Consent Process Scene II The Return of Genomic Findings Online Play "It's Not That Simple" and "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 and 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 and Theatre Chapter 6 DRAMATIZING THE PAST, PRESENT and FUTURE: Theatrical Narratives from Genetics to Genomics Section I The Theatrical Double Helix and "Chromozones" Section II Mapping and Manipulating Fate Section III A Genomic Crystal Ball in the Post-Mapping Decade Additional Questions REFERENCES
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