Conducting inclusive research in genetics for transgender, gender‐diverse, and sex‐diverse individuals: Case analyses and recommendations from a clinical genomics study

Author:

Bland Harris T.1ORCID,Gilmore Marian J.2,Andujar Justin3,Martin Makenna A.3,Celaya‐Cobbs Natasha3,Edwards Clasherrol4,Gerhart Meredith3,Hooker Gillian W.35,Kraft Stephanie A.67,Marshall Dana R.8,Orlando Lori A.9,Paul Natalie A.1011,Pratap Siddharth4,Rosenbloom S. Trent1,Wiesner Georgia L.312,Mittendorf Kathleen F.12ORCID

Affiliation:

1. Department of Biomedical Informatics Vanderbilt University Medical Center Nashville Tennessee USA

2. Department of Translational and Applied Genomics, Center for Health Research Kaiser Permanente Northwest Portland Oregon USA

3. Division of Genetic Medicine, Department of Medicine Vanderbilt University School of Medicine Nashville Tennessee USA

4. Department of Microbiology, Immunology and Physiology Meharry Medical College Nashville Tennessee USA

5. Concert Genetics Nashville Tennessee USA

6. Treuman Katz Center for Pediatric Bioethics Seattle Children's Research Institute Seattle Washington USA

7. Department of Pediatrics, Bioethics and Palliative Care University of Washington School of Medicine Seattle Washington USA

8. Department of Pathology, Anatomy and Cell Biology Meharry Medical College Nashville Tennessee USA

9. Center for Applied Genomics and Precision Medicine Duke University Durham North Carolina USA

10. Rainbow Advocacy Inclusion and Networking Services Longview Washington USA

11. Lavender Spectrum Health Vancouver Washington USA

12. Vanderbilt‐Ingram Cancer Center Vanderbilt University Medical Center Nashville Tennessee USA

Abstract

AbstractA person's phenotypic sex (i.e., endogenous expression of primary, secondary, and endocrinological sex characteristics) can impact crucial aspects of genetic assessment and resulting clinical care recommendations. In studies with genetics components, it is critical to collect phenotypic sex, information about current organ/tissue inventory and hormonal milieu, and gender identity. If researchers do not carefully construct data models, transgender, gender diverse, and sex diverse (TGSD) individuals may be given inappropriate care recommendations and/or be subjected to misgendering, inflicting medical and psychosocial harms. The recognized need for an inclusive care experience should not be limited to clinical practice but should extend to the research setting, where researchers must build an inclusive experience for TGSD participants. Here, we review three TGSD participants in the Family History and Cancer Risk Study (FOREST) to critically evaluate sex‐ and gender‐related survey measures and associated data models in a study seeking to identify patients at risk for hereditary cancer syndromes. Furthermore, we leverage these participants' responses to sex‐ and gender identity‐related questions in FOREST to inform needed changes to the FOREST data model and to make recommendations for TGSD‐inclusive genetics research design, data models, and processes.

Funder

Center for Strategic Scientific Initiatives, National Cancer Institute

Publisher

Wiley

Subject

Genetics (clinical)

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