Genetic data and electronic health records: a discussion of ethical, logistical and technological considerations

J Am Med Inform Assoc. Jan-Feb 2014;21(1):171-80. doi: 10.1136/amiajnl-2013-001694. Epub 2013 Jun 14.

Abstract

Objective: The completion of sequencing the human genome in 2003 has spurred the production and collection of genetic data at ever increasing rates. Genetic data obtained for clinical purposes, as is true for all results of clinical tests, are expected to be included in patients' medical records. With this explosion of information, questions of what, when, where and how to incorporate genetic data into electronic health records (EHRs) have reached a critical point. In order to answer these questions fully, this paper addresses the ethical, logistical and technological issues involved in incorporating these data into EHRs.

Materials and methods: This paper reviews journal articles, government documents and websites relevant to the ethics, genetics and informatics domains as they pertain to EHRs.

Results and discussion: The authors explore concerns and tasks facing health information technology (HIT) developers at the intersection of ethics, genetics, and technology as applied to EHR development.

Conclusions: By ensuring the efficient and effective incorporation of genetic data into EHRs, HIT developers will play a key role in facilitating the delivery of personalized medicine.

Keywords: Electronic Health Records; Ethics, Medical; Genomics; Individualized Medicine; Medical Informatics.

Publication types

  • Research Support, N.I.H., Extramural
  • Review

MeSH terms

  • Electronic Health Records* / ethics
  • Electronic Health Records* / organization & administration
  • Genetic Testing / ethics*
  • Genomics* / education
  • Genomics* / ethics
  • Genomics* / organization & administration
  • Humans
  • Medical Informatics / ethics