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

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.