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
1. Concept, history, and state of debate
2. 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
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. Accordingly Dr. Langanke's publications are primarily dealing with ethical and theoretical questions related to the usage of IT-based algorithms in medicine and care, to the translation of systems medicine to clinics, to big data approaches in medicine and to Personalized/Individualized Medicine. Dr. Langanke recieved his Doctor of Philosophy at the University of Erlangen-Nuremberg (Germany) and his Doctor of Divinity at the University of Greifswald (Germany). 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. Her study on incidental findings from population-based imaging reserach was recognized with the Research Award 2015 of the German Association of Ethics Committees. In 2018 Dr. Erdmann was appointed to a professorship of ethics at the Medical School Berlin, but before she could take up this prestigious position she died in June, 2018. Dr.Erdmann recieved her doctor's degree at the University of Greifswald (Germany). 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. Dr. Brothers is an experienced clinical ethicist and serves as the chair for the ethics committee at Norton Childrens Hospital. Dr. Brothers received his Doctor of Medicine from the University of Louisville School of Medicine. He completed his residency training and chief residency in Pediatrics at Vanderbilt Children's Hospital, and his PhD in Ethics and Society at Vanderbilt University.
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