Ethical standards for unconsented data access to build genomic and other medical information commons

Authored by: Barbara J. Evans

Routledge Handbook of the Study of the Commons

Print publication date:  January  2019
Online publication date:  January  2019

Print ISBN: 9781138060906
eBook ISBN: 9781315162782
Adobe ISBN:

10.4324/9781315162782-22

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Abstract

Large-scale medical information commons provide infrastructure to advance the basic science of human genetics, clinical applications of genomic testing, and precision medicine (National Academy of Sciences 2011; Messner et al. 2016; Cook-Deegan and McGuire 2017; Majumder et al., Chapter 21, this volume). This chapter uses “genomic data commons” to refer to the subset of medical information commons containing at least some gene sequencing data along with other health-related information. Genomic data commons compile diverse sources of data about individuals—medical, genetic, environmental, lifestyle, and other data—and include data for large groups of people. They exemplify the big data resources on which 21st-century science increasingly relies.

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