NIH Reporter #1ZIAHG200403-07

Examining the Equitable Integration of Genomics in Health Care and Society

This NIH-funded project explores equitable integration of genomics in healthcare, focusing on sickle cell disease community perspectives, educational outreach, genomic data use in minority populations, and the sociological context of race in genomics research, alongside trust issues in healthcare.

Description

With rapid advancements in genomic research, this project studies the views and opinions of sickle cell disease (SCD) community stakeholders and conducts normative research on somatic and germline gene editing. It includes focus groups across seven US states, development of educational materials for SCD gene therapy, studies on the use of genomic information in clinical care with minority and low-resource populations, and investigations into the use of race and ethnicity as population descriptors in genomics research. The project also examines the impact of mistrust on biomedical research and healthcare.

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