Genomic data in the electronic medical record: perspectives from a biobank community advisory board

J Empir Res Hum Res Ethics. 2014 Dec;9(5):16-24. doi: 10.1177/1556264614553922. Epub 2014 Oct 13.

Abstract

A proof of principle pharmacogenomic translational study was used as a case example to explore Biobank Community Advisory Board (CAB) member views about placing genomic information into the medical record and to establish how CAB input could affect research design. CAB members expressed enthusiasm for the potential benefit of the research discussed, yet voiced concerns regarding the recruitment and consent materials. They discussed the value of genomic research and its clinical utility; the risk of genetic discrimination; and personal ownership of genomic data. Members distinguished between indirect benefits to future generations and individual risk to research participants. Feedback was used to revise the recruitment and consent materials. Results highlight tensions reported between the public's support for genomic research and concerns with genomic information in the medical record and its use in medical decision-making.

Keywords: community advisory board; genomics/genetics; medical record; pharmacogenomics study.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Biological Specimen Banks*
  • Biomedical Research*
  • Confidentiality*
  • DNA
  • Electronic Health Records*
  • Ethics, Research
  • Genome*
  • Genomics
  • Humans
  • Informed Consent*
  • Ownership
  • Patient Selection
  • Privacy*
  • Research Design
  • Risk Assessment

Substances

  • DNA