Other Medicine and Health Sciences Commons^™

Respecting Autonomy And Enabling Diversity: The Effect Of Eligibility And Enrollment On Research Data Demographics, Kayte Spector-Bagdady, Shengpu Tang, Sarah Jabbour, Nicholson Price, Ana Bracic, Melissa S. Creary, Sachin Kheterpal, Chad M. Brummett, Jenna Wiens

Articles

Many promising advances in precision health and other Big Data research rely on large data sets to analyze correlations among genetic variants, behavior, environment, and outcomes to improve population health. But these data sets are generally populated with demographically homogeneous cohorts. We conducted a retrospective cohort study of patients at a major academic medical center during 2012–19 to explore how recruitment and enrollment approaches affected the demographic diversity of participants in its research biospecimen and data bank. We found that compared with the overall clinical population, patients who consented to enroll in the research data bank were significantly less diverse …