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.
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Table of Contents
1. Concept, history, and state of debate2. Oversight, governance, and policy for making decisions about return of individual genomic findings
3. Selecting secondary findings to report: Creating a list that suits your study
4. How secondary findings are made
5. Informed consent and decision-making
6. Reporting of secondary findings in genomic research: Stakeholders' attitudes and preferences
7. Disclosing genomic sequencing results
8. Implications of secondary findings for clinical contexts
9. Secondary findings: Building a bridge to the future of ELSI
