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Recommendations to encourage participation of individuals from diverse backgrounds in psychiatric genetic studies

Authors :
Casey MacDermod
Michaela A. Pettie
Emily A. Carrino
Susana Cruz Garcia
Sophie Padalecki
Jody E. Finch
Christina Sanzari
Hannah L. Kennedy
Pratiksha S. Pawar
Makenna M. Mcgough
Ava Iwashita
Mary Takgbajouah
Danielle Coan
Lindsey Szakasits
Rachel W. Goode
Ya‐Ke Wu
Mae Lynn Reyes‐Rodríguez
Eva María Trujillo Chi Vacuán
Martin A. Kennedy
Lana Cleland
Jennifer Jordan
Sarah Maguire
Jerry D. Guintivano
Paola Giusti‐Rodríguez
Jessica H. Baker
Laura M. Thornton
Cynthia M. Bulik
Source :
American Journal of Medical Genetics Part B: Neuropsychiatric Genetics. 189:163-173
Publication Year :
2022
Publisher :
Wiley, 2022.

Abstract

We present innovative research practices in psychiatric genetic studies to ensure representation of individuals from diverse ancestry, sex assigned at birth, gender identity, age, body shape and size, and socioeconomic backgrounds. Due to histories of inappropriate and harmful practices against marginalized groups in both psychiatry and genetics, people of certain identities may be hesitant to participate in research studies. Yet their participation is essential to ensure diverse representation, as it is incorrect to assume that the same genetic and environmental factors influence the risk for various psychiatric disorders across all demographic groups. We present approaches developed as part of the Eating Disorders Genetics Initiative (EDGI), a study that required tailored approaches to recruit diverse populations across many countries. Considerations include research priorities and design, recruitment and study branding, transparency, and community investment and ownership. Ensuring representation in participants is costly and funders need to provide adequate support to achieve diversity in recruitment in prime awards, not just as supplemental afterthoughts. The need for diverse samples in genetic studies is critical to minimize the risk of perpetuating health disparities in psychiatry and other health research. Although the EDGI strategies were designed specifically to attract and enroll individuals with eating disorders, our approach is broadly applicable across psychiatry and other fields.

Details

ISSN :
1552485X and 15524841
Volume :
189
Database :
OpenAIRE
Journal :
American Journal of Medical Genetics Part B: Neuropsychiatric Genetics
Accession number :
edsair.doi.dedup.....29fd1d51fd72ec67a6177257ad2f335f
Full Text :
https://doi.org/10.1002/ajmg.b.32906