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

Brittany C. Kimball, Katherine E. Nowakowski, Karen J. Maschke, Jennifer McCormick

Research output: Contribution to journalArticle

10 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)16-24
Number of pages9
JournalJournal of Empirical Research on Human Research Ethics
Volume9
Issue number5
DOIs
StatePublished - Jan 1 2014

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Electronic medical equipment
Electronic Health Records
electronics
Research
community
Medical Records
Ownership
Social Responsibility
public support
research planning
Research Design
discrimination
decision making
Decision making
Feedback

All Science Journal Classification (ASJC) codes

  • Social Psychology
  • Education
  • Communication
  • Law

Cite this

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Genomic data in the electronic medical record : Perspectives from a biobank community advisory board. / Kimball, Brittany C.; Nowakowski, Katherine E.; Maschke, Karen J.; McCormick, Jennifer.

In: Journal of Empirical Research on Human Research Ethics, Vol. 9, No. 5, 01.01.2014, p. 16-24.

Research output: Contribution to journalArticle

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