Should Electronic Health Record-Derived Social and Behavioral Data Be Used in Precision Medicine Research?

Brittany Hollister; Vence L Bonham

doi:10.1001/amajethics.2018.873

Should Electronic Health Record-Derived Social and Behavioral Data Be Used in Precision Medicine Research?

AMA J Ethics. 2018 Sep 1;20(9):E873-880. doi: 10.1001/amajethics.2018.873.

Authors

Brittany Hollister¹, Vence L Bonham²

Affiliations

¹ A health disparities postdoctoral fellow at the National Human Genome Research Institute within the National Institutes of Health in Bethesda, Maryland.
² An associate investigator in the Social and Behavioral Research Branch (SBRB) of the National Human Genome Research Institute within the National Institutes of Health in Bethesda, Maryland.

PMID: 30242819
DOI: 10.1001/amajethics.2018.873

Abstract

Precision medicine research initiatives aim to use participants' electronic health records (EHRs) to obtain rich longitudinal data for large-scale precision medicine studies. Although EHRs vary widely in their inclusion and formatting of social and behavioral data, these data are essential to investigating genetic and social factors in health disparities. We explore possible biases in collecting, using, and interpreting EHR-based social and behavioral data in precision medicine research and their consequences for health equity.

MeSH terms

Bias*
Biomedical Research* / ethics
Data Collection* / ethics
Electronic Health Records*
Ethics, Research
Genomics / ethics
Health Equity
Health Status Disparities
Humans
Precision Medicine*