Genomic data in the electronic medical record: perspectives from a biobank community advisory board.
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.
Mayo Clinic, Rochester, MN, USA.
Brittany C
BC
Kimball
Mayo Clinic, Rochester, MN, USA.
Katherine E
KE
Nowakowski
The Hastings Center, Garrison, NY, USA.
Karen J
KJ
Maschke
Mayo Clinic, Rochester, MN, USA mccormick.jb@mayo.edu.
Jennifer B
JB
McCormick
D018070:Biological Specimen Banks; D035843:Biomedical Research; D003219:Confidentiality; D004247:DNA; D057286:Electronic Health Records; D032984:Ethics, Research; D016678:Genome; D023281:Genomics; D006801:Humans; D007258:Informed Consent; D010067:Ownership; D018579:Patient Selection; D018907:Privacy; D012107:Research Design; D018570:Risk Assessment
D004247:DNA
community advisory board; genomics/genetics; medical record; pharmacogenomics study