P747: The collection and use of patient sex, gender, race, ethnicity, and ancestry data among US-based clinical genomics laboratories

Clinical genetics organizations are responsible for continually assessing their practices and procedures using a lens of diversity, equity, and inclusion. However, there is a dearth of guidance pertaining to these principles from regulatory and professional organizations that laboratories generally defer to for direction. The collection of patient demographics including sex, gender, and race, ethnicity, and ancestry (REA) by genetic testing laboratories is not standardized and lacks consensus. Furthermore, evidence for the precise scientific value of this information on laboratory workflows is limited.

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Publication Details

Journal
Genetics in Medicine Open
Published
2025-01-01
DOI
https://doi.org/10.1016/j.gimo.2025.103116
Primary Topic
Ethics in Clinical Research
Type
article
Field-Weighted Citation Impact
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article

P747: The collection and use of patient sex, gender, race, ethnicity, and ancestry data among US-based clinical genomics laboratories

Darci L Sternen, Katie Golden‐Grant, Sarah Clowes Candadai, Katrina E. Kotzer
Genetics in Medicine Open
Ethics in Clinical Research
article

P747: The collection and use of patient sex, gender, race, ethnicity, and ancestry data among US-based clinical genomics laboratories

Darci L Sternen, Katie Golden‐Grant, Sarah Clowes Candadai, Katrina E. Kotzer
article en

Abstract

Clinical genetics organizations are responsible for continually assessing their practices and procedures using a lens of diversity, equity, and inclusion. However, there is a dearth of guidance pertaining to these principles from regulatory and professional organizations that laboratories generally defer to for direction. The collection of patient demographics including sex, gender, and race, ethnicity, and ancestry (REA) by genetic testing laboratories is not standardized and lacks consensus. Furthermore, evidence for the precise scientific value of this information on laboratory workflows is limited.

Genetics in Medicine OpenVol. 3
Children’s Institute (US), Seattle Children's Hospital (US), Mayo Clinic in Arizona (US)
Gender equality
Openalex Percentile: Top 93%
Ethics in Clinical Research
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