Secondary Findings in Genomic Research - 1st Edition - ISBN: 9780128165492

Secondary Findings in Genomic Research

1st Edition

Series Volume Editors: Martin Langanke Pia Erdmann Kyle Brothers
Paperback ISBN: 9780128165492
Imprint: Academic Press
Published Date: 1st May 2020
Page Count: 312
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Table of Contents

  1. Concepts, history and state of debate
    2. Oversight, governance, and policy for making decisions about return
    3. Selecting Secondary Findings to Report: Creating a List that Suits your Study
    4. How secondary findings are made
    5. Communication, Consent, and Decision-Making
    6. Reporting of secondary findings in genomic research: Stakeholders’ attitudes and preferences
    7. Approaches for Disclosing Results
    8. Implications of secondary findings for clinical contexts
    9. Summary and Outlook

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.

Key Features

  • 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

Readership

Active researchers, basic and translational scientists, clinicians, postgraduates, and students in the areas of genetics, human genomics, pathology and bioinformatics; medical students, pediatricians; internal medicine physicians and residents; genetic counselors, and genetic counseling students; clinical and laboratory genetics trainees (residents and fellows); law students and legal professionals; students and professional in biomedical ethics, research ethics, public policy, and regulatory practice


Details

No. of pages:
312
Language:
English
Copyright:
© Academic Press 2020
Published:
1st May 2020
Imprint:
Academic Press
Paperback ISBN:
9780128165492

Ratings and Reviews


About the Series Volume Editors

Martin Langanke Series Volume Editor

Dr. Langanke holds experience in both normative and empirical research related to secondary findings generated through big data approaches, systems medicine, and personalized/individualized medicine. He was an active member and funded postdoc scholar within the Greifswald Approach to Individualized Medicine (GANI_MED) from 2009 and 2014. For this consortium, he conducted conceptual, quantitative, and qualitative research on issues of consent, consent management, data sharing, and return of results in -omics research. His experience with collaborative, multisite research is demonstrated by his work in the GANI_MED consortium, as well as in his own projects. Currently, Dr. Langanke serves as the PI of the German MENON project, funded by the German Ministry of Education and Research, which deals with theoretical, ethical, and economic aspects of Systems Medicine.

Affiliations and Expertise

Protestant University of Applied Sciences Bochum

Pia Erdmann Series Volume Editor

Dr. Pia Erdmann has extensive experience in both normative and empirical research related to secondary findings in imaging examinations and genomic research. Between 2009 and 2013, she conducted a study with 550 participants based on a sequential explanatory mixed methods design. This study dealt with the consequences of disclosing secondary findings from imaging. This work was recognized with the Research Award 2015 of the German Association of Ethics Committees. Currently Dr. Erdmann conducts research as a postdoctoral scholar in the MENON project, which is funded by the German Ministry of Education and Research. This project deals with the theoretical, ethical, and economical aspects of systems medicine, and examines ambivalence in returning results in current Alzheimer’s disease research.

Affiliations and Expertise

Postdoctoral Scholar, University of Greifswald, School of Medicine, Greifswald, Mecklenburg Western Pomerania

Kyle Brothers Series Volume Editor

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 Children’s 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.

Affiliations and Expertise

Endowed Chair of Pediatric Clinical and Translational Research, University of Louisville