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Last Posted: Mar 21, 2023
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Sickle Cell Data Collection Program
CDC, March 2023 Brand

This notice of funding opportunity allows recipients to gather unique data and conduct in-depth analyses to inform their sickle cell disease (SCD) efforts and to compare and contrast SCD-related health care and health outcomes across states and across population groups. Each state has a unique demographic makeup, health disparities, distinct health care policies, and challenges related to access to care; all of these factors play a large role in the outcomes and experiences of individuals with SCD.

Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field
NASEM Report, March 2023,

Genetic and genomic information has become far more accessible, and research using human genetic data has grown exponentially over the past decade. Genetics and genomics research is now being conducted by a wide range of investigators across disciplines, who often use population descriptors inconsistently and/or inappropriately to capture the complex patterns of continuous human genetic variation. The report focuses on understanding the current use of population descriptors in genomics research, examining best practices for researchers, and identifying processes for adopting best practices within the biomedical and scientific communities.

2022 ASHG presidential address-One human race: Billions of genomes.
Charles N Rotimi et al. American journal of human genetics 2023 3 (3) 398-401

Genomics-driven scientific and medical innovations are currently not shared equitably by all human populations with the resulting well-documented global challenge of lack of diversity in both the participants and scientists that are engaged in genomic sciences. If not urgently and systematically addressed, these challenges will likely compromise our goal and vision that “people everywhere realize the benefits of human genetics and genomics research.”

On the report of the ASHG "Facing Our History-Building an Equitable Future" initiative.
et al. American journal of human genetics 2023 3 (3) 375-376

As the community’s oldest and largest professional society, ASHG has been late in making explicit efforts to integrate equity, diversity, and inclusion into its values, programs, and voice. The Society affirmatively seeks to reckon with, and sincerely apologizes for, its involvement in and silence on the misuse of human genetics research to justify and contribute to injustices in all forms.

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Disclaimer: Articles listed in the Public Health Genomics and Precision Health Knowledge Base are selected by the CDC Office of Public Health Genomics to provide current awareness of the literature and news. Inclusion in the update does not necessarily represent the views of the Centers for Disease Control and Prevention nor does it imply endorsement of the article's methods or findings. CDC and DHHS assume no responsibility for the factual accuracy of the items presented. The selection, omission, or content of items does not imply any endorsement or other position taken by CDC or DHHS. Opinion, findings and conclusions expressed by the original authors of items included in the update, or persons quoted therein, are strictly their own and are in no way meant to represent the opinion or views of CDC or DHHS. References to publications, news sources, and non-CDC Websites are provided solely for informational purposes and do not imply endorsement by CDC or DHHS.

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