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Current Ethical Issues Related to the Implementation of Whole-Exome and Whole-Genome Sequencing

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Movement Disorder Genetics

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Abstract

We have briefly discussed herein four of the many aspects that raise concerns in the context of implementation of whole-exome and whole-genome sequencing (mainly) in the clinical realm. Namely, we addressed issues surrounding: (1) the duty to hunt for variants known to have a health impact, (2) such “hunting” or opportunistic screening in children, (3) challenges to the consent process, and (4) the commercialization of genetic testing direct to consumer.

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Authors and Affiliations

  1. Department of Public Health and Primary Care, KU Leuven, Leuven, 3000, Belgium

    Pascal Borry PhD, Davit Chokoshvili MA, MSc & Louiza Kalokairinou LLM, MSc

  2. Erasmus Mundus Joint International Doctoral Fellow in Law, Science and Technology, Brussels, Belgium

    Emilia Niemiec MSc

  3. Department of Law, University of Turin, Turin, Italy

    Emilia Niemiec MSc

  4. Centre for Ethics and Law in the Life Sciences, Leibniz University, Hannover, Germany

    Emilia Niemiec MSc

  5. School of Population and Global Health, Centre for Health Equity, University of Melbourne, Parkville, VIC, 3052, Australia

    Danya F. Vears BS, MS

  6. Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethic, Uppsala University, Uppsala, SE-751 22, Sweden

    Heidi Carmen Howard PhD

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  1. Pascal Borry PhD
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  2. Davit Chokoshvili MA, MSc
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  3. Emilia Niemiec MSc
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  4. Louiza Kalokairinou LLM, MSc
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  5. Danya F. Vears BS, MS
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  6. Heidi Carmen Howard PhD
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Correspondence to Pascal Borry PhD .

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Editors and Affiliations

  1. Department of Neurology, University Hospital Kiel, Kiel, Germany

    Susanne A. Schneider

  2. Department of Molecular Neuroscience, University College London, Institute of Neurology, London, United Kingdom

    José M. Tomás Brás

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Borry, P., Chokoshvili, D., Niemiec, E., Kalokairinou, L., Vears, D.F., Howard, H.C. (2015). Current Ethical Issues Related to the Implementation of Whole-Exome and Whole-Genome Sequencing. In: Schneider, S., Brás, J. (eds) Movement Disorder Genetics. Springer, Cham. https://doi.org/10.1007/978-3-319-17223-1_22

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  • DOI: https://doi.org/10.1007/978-3-319-17223-1_22

  • Publisher Name: Springer, Cham

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