Literature DB >> 30209973

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

Lucia A Hindorff1, Vence L Bonham2, Lucila Ohno-Machado3.   

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.

Entities:  

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

Mesh:

Year:  2018        PMID: 30209973      PMCID: PMC6287493          DOI: 10.2217/pme-2018-0037

Source DB:  PubMed          Journal:  Per Med        ISSN: 1741-0541            Impact factor:   2.512


  51 in total

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5.  Association of Racial/Ethnic Categories With the Ability of Genetic Tests to Detect a Cause of Cardiomyopathy.

Authors:  Latrice G Landry; Heidi L Rehm
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6.  Design and implementation of the Hispanic Community Health Study/Study of Latinos.

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7.  Adrift in the Gray Zone: IRB Perspectives on Research in the Learning Health System.

Authors:  Sandra Soo-Jin Lee; Maureen Kelley; Mildred K Cho; Stephanie Alessi Kraft; Cyan James; Melissa Constantine; Adrienne N Meyer; Douglas Diekema; Alexander M Capron; Benjamin S Wilfond; David Magnus
Journal:  AJOB Empir Bioeth       Date:  2016-03-02

Review 8.  Epigenetics and Human Disease.

Authors:  Huda Y Zoghbi; Arthur L Beaudet
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Review 9.  Twenty years post-NIH Revitalization Act: enhancing minority participation in clinical trials (EMPaCT): laying the groundwork for improving minority clinical trial accrual: renewing the case for enhancing minority participation in cancer clinical trials.

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10.  A standardized framework for representation of ancestry data in genomics studies, with application to the NHGRI-EBI GWAS Catalog.

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Journal:  Genome Biol       Date:  2018-02-15       Impact factor: 13.583

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  15 in total

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Review 2.  Importance of Genetic Studies of Cardiometabolic Disease in Diverse Populations.

Authors:  Lindsay Fernández-Rhodes; Kristin L Young; Adam G Lilly; Laura M Raffield; Heather M Highland; Genevieve L Wojcik; Cary Agler; Shelly-Ann M Love; Samson Okello; Lauren E Petty; Mariaelisa Graff; Jennifer E Below; Kimon Divaris; Kari E North
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Review 3.  The Future of Genomic Studies Must Be Globally Representative: Perspectives from PAGE.

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Authors:  Ana Morales; Daniel D Kinnamon; Elizabeth Jordan; Julia Platt; Matteo Vatta; Michael O Dorschner; Carl A Starkey; Jonathan O Mead; Tomohiko Ai; Wylie Burke; Julie Gastier-Foster; Gail P Jarvik; Heidi L Rehm; Deborah A Nickerson; Ray E Hershberger
Journal:  Circ Genom Precis Med       Date:  2020-03-11

5.  The Emergence of Genomic Research in Africa and New Frameworks for Equity in Biomedical Research.

Authors:  Amy R Bentley; Shawneequa Callier; Charles Rotimi
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6.  Creating accessible Spanish language materials for Clinical Sequencing Evidence-Generating Research consortium genomic projects: challenges and lessons learned.

Authors:  Nangel M Lindberg; Amanda M Gutierrez; Kathleen F Mittendorf; Michelle A Ramos; Beatriz Anguiano; Frank Angelo; Galen Joseph
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Review 8.  Genome-wide Association Studies in Ancestrally Diverse Populations: Opportunities, Methods, Pitfalls, and Recommendations.

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Journal:  Cell       Date:  2019-10-10       Impact factor: 41.582

9.  Ethical and Legal Considerations for the Inclusion of Underserved and Underrepresented Immigrant Populations in Precision Health and Genomic Research in the United States.

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Journal:  Ethn Dis       Date:  2019-12-12       Impact factor: 2.006

10.  Practices and Attitudes toward Returning Genomic Research Results to Low-Resource Research Participants.

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