Description of Secondary Findings in Genomic Research
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
About the Author
Martin Langanke, PhD, DD is a Full Professor of Ethics at the Protestant University of Applied Sciences, Bochum (Germany). Dr. Langanke is a philosopher and bioethicist who predominantly conducts research on normative and theoretical issues in the translation of innovative medical research approaches to routine care.
Pia Erdmann, PhD was a German sociologist and ethicist with a strong expertise in empirical research related to normative aspects of medical research and translational medicine. Between 2009 and 2018 she conducted empirical research on the consequences of disclosing incidental findings from population-based imaging research, on theoretical and ethical aspects of systems medicine and on issues related to the return of results in current Alzheimer’s disease research.
Kyle Brothers, MD, PhD is an Associate Professor of Pediatrics and the Endowed Chair for Pediatric Clinical and Translational Research at the University of Louisville. Dr. Brothers is a pediatrician and bioethicist who conducts research on ethical issues in the translation of genomic technologies to clinical practice, and research ethics issues encountered in the development and operation of biorepositories, data collections, and research networks.