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Full-Text Articles in Race and Ethnicity

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 Jan 2021

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 …


Pandemic Surveillance Discrimination, Christian Sundquist Jan 2021

Pandemic Surveillance Discrimination, Christian Sundquist

Articles

The COVID-19 pandemic has laid bare the abiding tension between surveillance and privacy. Public health epidemiology has long utilized a variety of surveillance methods—such as contact tracing, quarantines, and mandatory reporting laws—to control the spread of disease during past epidemics and pandemics. Officials have typically justified the resulting intrusions on privacy as necessary for the greater public good by helping to stave off larger health crisis. The nature and scope of public health surveillance in the battle against COVID-19, however, has significantly changed with the advent of new technologies. Digital surveillance tools, often embedded in wearable technology, have greatly increased …