Last
Posted:
May 02, 2024
Highlights
Genetic Research within Indigenous Communities: Engagement Opportunities and Pathways Forward
From the abstract: " Against a historical backdrop of researchers who violated trust through lack of benefit sharing, transparency, and engagement, efforts are underway to develop better approaches for genetic and genomic research with Indigenous communities. To increase engagement, there is a need to understand factors that impact researcher and community collaborations. This study aimed to understand the barriers, challenges, and facilitators of Indigenous Peoples in the US participating in genetic research."
Inequity of genetic screening: DNA tests fail non-white families more often
From the article: "DNA sequencing for metabolic diseases in newborns may eventually replace the traditional method of genetic screening used to check all new babies for a group of rare, inherited diseases that can cause severe neurologic damage and death if not detected quickly. But currently, research is showing that those advanced methods of genetic tests aren't equally useful for everyone: They're less accurate for non-white families, raising concerns about how historical gaps in whose DNA gets studied produce inequities in medical care."
Aspiring toward equitable benefits from genomic advances to individuals of ancestrally diverse backgrounds
From the abstract: "Despite the promise of genomic technologies, their full potential remains untapped without including individuals of diverse ancestries and integrating social determinants of health (SDOHs). The NHGRI launched the 2020 Strategic Vision with ten bold predictions by 2030, including “individuals from ancestrally diverse backgrounds will benefit equitably from advances in human genomics." Meeting this goal requires a holistic approach that brings together genomic advancements with careful consideration to healthcare access as well as SDOHs to ensure that translation of genetics research is inclusive, affordable, and accessible and ultimately narrows rather than widens health disparities. "
Genetic Researchers' Use of and Interest in Research With Diverse Ancestral Groups.
From the article: " Question: Are genetic researchers interested in research with diverse ancestral groups, and how can data stewards encourage that use?
Findings: In this survey study of 294 genetic researchers, significantly more respondents reported working with data from European ancestral populations than any other ancestral population, and European samples were more likely to be considered by researchers as adequate across data-steward type. Most researchers were interested in using more diverse ancestral populations and reported that increasing ancestral diversity of existing databases would enable such research. Meaning: These findings suggest that there are specific gaps in access to and composition of genetic databases, underscoring the need to boost diversity in existing research samples to improve inclusivity in genetic research practices."
