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The Future of BioethicsInternational Dialogues$
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Akira Akabayashi

Print publication date: 2014

Print ISBN-13: 9780199682676

Published to Oxford Scholarship Online: January 2014

DOI: 10.1093/acprof:oso/9780199682676.001.0001

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PRINTED FROM OXFORD SCHOLARSHIP ONLINE (oxford.universitypressscholarship.com). (c) Copyright Oxford University Press, 2021. All Rights Reserved. An individual user may print out a PDF of a single chapter of a monograph in OSO for personal use. date: 28 October 2021

Primary Topic Article

Primary Topic Article

Genetic Research to Facilitate Personalized Medicine: Ethical and Policy Challenges

(p.284) 7.1 Primary Topic Article
The Future of Bioethics

Karen J. Maschke

Oxford University Press

Several large-scale genetic research initiatives in the U.S. are specifically designed to return to participants some but not all of the genetic information obtained from analyses of their DNA. Two genetic research initiatives examined in this chapter – the Coriell Personalized Medicine Collaborative and the ClinSeq project – offer participants genetic information that an expert gatekeeping committee decides is “returnable.” Analysis of the Coriell and ClinSeq initiatives reveals 1) differences in how each defines results that are “returnable,” 2) that research participants may not change their health-related behaviors after receiving genetic-risk information, and 3) that the “conditional return” approach may not satisfy the desire of many research participants to receive all of their genetic research results.

Keywords:   Genetic research, genomic research, biobanks, return of genetic research results, return of genomic research results, genomic-based medicine, personalized medicine

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