Description
Secondary Findings in Genomic Research offers a single, highly accessible resource on interpreting, managing and disclosing secondary findings in genomic research. With chapters written by experts in the field, this book is the first to concisely explain the ethical and practical issues raised by secondary genomics findings for a multi and interdisciplinary audience of genomic researchers, translational scientists, clinicians, medical students, genetic counselors, ethicists, legal experts and law students, public policy specialists and regulators.Contributors from Europe, North America, and Asia effectively synthesize perspectives from a spectrum of different scientific, societal, and global contexts, and offer pragmatic approaches to a range of topics, including oversight, governance and policy surrounding secondary genomic results, criteria for identifying results for return, communication and consent, stakeholders' attitudes and perspectives, disclosing results, and clinical, patient-centered protocols.- Thoroughly addresses the scientific, ethical, practical and clinical issues raised by secondary findings resulting from genomic research, including active debate and challenges in the field- Provides researchers, clinicians, regulators, and stakeholders with a holistic, interdisciplinary approach to interpreting, managing and disclosing secondary findings- Brings together expert analysis from scholars across Europe, North America, and Asia representing a wide variety of scientific and societal contexts
Table of Contents
1. Concept, history, and state of debate2. Oversight, governance, and policy for making decisions about return of individual genomic findings3. Selecting secondary findings to report: Creating a list that suits your study4. How secondary findings are made5. Informed consent and decision-making6. Reporting of secondary findings in genomic research: Stakeholders' attitudes and preferences7. Disclosing genomic sequencing results8. Implications of secondary findings for clinical contexts9. Secondary findings: Building a bridge to the future of ELSI
