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.
Authors
- Darci L Sternen
- Katie Golden‐Grant
- Sarah Clowes Candadai
- Katrina E. Kotzer (ORCID: https://orcid.org/0000-0001-7460-6062)
Institutions
- Children’s Institute (US)
- Seattle Children's Hospital (US)
- Mayo Clinic in Arizona (US)
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
- 0.00