Respecting Autonomy And Enabling Diversity: The Effect Of Eligibility And Enrollment On Research Data Demographics: Study examines the effect of eligibility and …

K Spector-Bagdady, S Tang, S Jabbour, WN Price… - Health …, 2021 - healthaffairs.org
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 …

[HTML][HTML] Diversity and inclusion for the All of Us research program: A scoping review

BM Mapes, CS Foster, SV Kusnoor, MI Epelbaum… - PloS one, 2020 - journals.plos.org
The All of Us Research Program (All of Us) is a national effort to accelerate health research
by exploring the relationship between lifestyle, environment, and genetics. It is set to …

Examining the cascade of participant attrition in a genomic medicine research study: barriers and facilitators to achieving diversity

EG Moore, M Roche, C Rini, EW Corty, Z Girnary… - Public health …, 2018 - karger.com
Abstract Background/Aims: Recent genomic medicine initiatives underscore the importance
of including diverse participants in research. Considerable literature has identified barriers …

[HTML][HTML] A framework for promoting diversity, equity, and inclusion in genetics and genomics research

TR Rebbeck, JFP Bridges, JW Mack, SW Gray… - JAMA Health …, 2022 - jamanetwork.com
Importance Research into the genetic and genomic (“genomics”) foundations of disease is
central to our understanding of disease prevention, early detection, diagnostic accuracy, and …

Progress with the All of Us Research Program: opening access for researchers

AH Ramirez, KA Gebo, PA Harris - Jama, 2021 - jamanetwork.com
The All of Us Research Program is a longitudinal cohortinitiativeaimedatadvancingprecision…
improving human health by enrolling at least 1 million diverse individuals across the United …

[HTML][HTML] Building the partners healthcare biobank at partners personalized medicine: informed consent, return of research results, recruitment lessons and operational …

EW Karlson, NT Boutin, AG Hoffnagle… - Journal of personalized …, 2016 - mdpi.com
The Partners HealthCare Biobank is a Partners HealthCare enterprise-wide initiative whose
goal is to provide a foundation for the next generation of translational research studies of …

Potential bias in the bank: what distinguishes refusers, nonresponders and participants in a clinic-based biobank?

JL Ridgeway, LC Han, JE Olson, KA Lackore… - Public Health …, 2013 - karger.com
Background: Biobanks are an important resource for genetic and epidemiologic research,
but bias may be introduced if those who accept the recruitment invitation differ systematically …

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

LA Hindorff, VL Bonham… - Personalized Medicine, 2018 - Future Medicine
Advances in genomic medicine are arising from efforts to build a national learning
healthcare system (LHS) and large-scale precision medicine studies. However, the …

Self-reported race and ethnicity of US biobank participants compared to the US Census

EG Cohn, N Hamilton, EL Larson… - Journal of community …, 2017 - Springer
Precision medicine envisions a future of effective diagnosis, treatment, and prevention
grounded in precise understandings of the genetic and environmental determinants of …

[HTML][HTML] Committing to genomic answers for all kids: evaluating inequity in genomic research enrollment

NJ Kane, ASA Cohen, C Berrios, B Jones… - Genetics in …, 2023 - Elsevier
Purpose Persistent inequities in genomic medicine and research contribute to health
disparities. This analysis uses a context-specific and equity-focused strategy to evaluate …