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Discover Pediatric Collections on COVID-19 and Racism and Its Effects on Pediatric Health

American Academy of Pediatrics
SUPPLEMENT ARTICLE

“Big Data” Versus “Big Brother”: On the Appropriate Use of Large-scale Data Collections in Pediatrics

Janet Currie
Pediatrics April 2013, 131 (Supplement 2) S127-S132; DOI: https://doi.org/10.1542/peds.2013-0252c
Janet Currie
Center for Health and Wellbeing, Woodrow Wilson School, Princeton University, Princeton, New Jersey
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Abstract

Discussions of “big data” in medicine often revolve around gene sequencing and biosamples. It is perhaps less recognized that administrative data in the form of vital records, hospital discharge abstracts, insurance claims, and other routinely collected data also offer the potential for using information from hundreds of thousands, if not millions, of people to answer important questions. However, the increasing ease with which such data may be used and reused has increased concerns about privacy and informed consent. Addressing these concerns without creating insurmountable barriers to the use of such data for research is essential if we are to avoid a “missed opportunity” in pediatrics research.

KEY WORDS
  • consent
  • risk
  • benefit
  • administrative records
  • vital statistics
  • natality
  • common rule
  • HIPAA
  • Abbreviations:
    HIPAA —
    Health Insurance Portability and Accountability Act
    IOM —
    Institute of Medicine
    IRB —
    institutional review board
    PHI —
    protected health information
    • Accepted January 23, 2013.
    • Copyright © 2013 by the American Academy of Pediatrics
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    Pediatrics
    Vol. 131, Issue Supplement 2
    1 Apr 2013
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    “Big Data” Versus “Big Brother”: On the Appropriate Use of Large-scale Data Collections in Pediatrics
    Janet Currie
    Pediatrics Apr 2013, 131 (Supplement 2) S127-S132; DOI: 10.1542/peds.2013-0252c

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    “Big Data” Versus “Big Brother”: On the Appropriate Use of Large-scale Data Collections in Pediatrics
    Janet Currie
    Pediatrics Apr 2013, 131 (Supplement 2) S127-S132; DOI: 10.1542/peds.2013-0252c
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      • Abstract
      • Examples of Pediatrics Research Using Administrative Data
      • Limitations on Data Access
      • Weighing Benefits and Risks
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