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Per Med. 2018 Sep;15(5):403-412. doi: 10.2217/pme-2018-0037. Epub 2018 Sep 13.

Enhancing diversity to reduce health information disparities and build an evidence base for genomic medicine.

Author information

1
Division of Genomic Medicine, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, 20892, USA.
2
Division of Intramural Research, Social & Behavioral Research Branch & Office of the Director, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, 20892, USA.
3
UCSD Health Department of Biomedical Informatics, University of California San Diego, La Jolla, CA, 92093, USA.

Abstract

Advances in genomic medicine are arising from efforts to build a national learning healthcare system (LHS) and large-scale precision medicine studies. However, the underlying evidence base lacks sufficient data from populations historically underrepresented in biomedical research. Although the literature on health and healthcare disparities is extensive, disparities in the availability and quality of health information about diverse and underrepresented populations are less well characterized. This Perspective describes scientific and ethical benefits to incorporating health information from diverse and underrepresented populations in the LHS, resulting in a more robust and generalizable LHS. Near-term recommendations for incorporating diversity into the evidence base for genomic medicine are proposed, even as the groundwork for national and international efforts is underway.

KEYWORDS:

LHS; diversity; ethnicity; evidence base; health disparities; health information disparities; healthcare disparities; knowledge base; learning healthcare system; race

PMID:
30209973
PMCID:
PMC6287493
DOI:
10.2217/pme-2018-0037
[Indexed for MEDLINE]
Free PMC Article

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