Should Electronic Health Record-Derived Social and Behavioral Data Be Used in Precision Medicine Research?
- 1 September 2018
- journal article
- Published by American Medical Association (AMA) in The AMA Journal of Ethic
- Vol. 20 (9), E873-880
- https://doi.org/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.Keywords
This publication has 11 references indexed in Scilit:
- The next generation of precision medicine: observational studies, electronic health records, biobanks and continuous monitoringHuman Molecular Genetics, 2018
- Implementing Machine Learning in Health Care — Addressing Ethical ChallengesThe New England Journal of Medicine, 2018
- The Role of the Health Care Provider in Building Trust Between Patients and Precision Medicine Research ProgramsAmerican Journal of Bioethics, 2018
- The Precision Medicine Initiative’s All of Us Research Program: an agenda for research on its ethical, legal, and social issuesGenetics in Medicine, 2017
- Precision medicine: opportunities, possibilities, and challenges for patients and providersJournal of the American Medical Informatics Association, 2016
- Achieving Equity in an Evolving Healthcare System: Opportunities and ChallengesThe American Journal of the Medical Sciences, 2016
- News from the NIH: potential contributions of the behavioral and social sciences to the precision medicine initiativeTranslational Behavioral Medicine, 2015
- Social Determinants of Health EquityAmerican Journal of Public Health, 2014
- Science faculty’s subtle gender biases favor male studentsProceedings of the National Academy of Sciences of the United States of America, 2012
- Education, Genetic Ancestry, and Blood Pressure in African Americans and WhitesAmerican Journal of Public Health, 2012