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

Lindsey Szakasits, Cynthia M Bulik, Laura M Thornton, Jessica H Baker, Paola Giusti-Rodríguez, Jerry D Guintivano, Sarah Maguire, Jennifer Jordan, Lana Cleland, Martin A Kennedy, Eva María Trujillo Chi Vacuán, Mae Lynn Reyes-Rodríguez, Ya-Ke Wu, Rachel W Goode, Casey MacDermod, Danielle Coan, Mary Takgbajouah, Ava Iwashita, Makenna M Mcgough, Pratiksha S Pawar, Hannah L Kennedy, Christina Sanzari, Jody E Finch, Sophie Padalecki, Susana Cruz Garcia, Emily A Carrino, Michaela A Pettie

Journal: American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics 2022;189(5):163-173

PMID: 35785430

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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.

Address: Department of Psychiatry, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.; Department of Pathology and Biomedical Science, University of Otago, Christchurch, New Zealand.; Department of Psychology and Neuroscience, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.; Department of Psychology, University at Albany, State University of New York, Albany, New York, USA.; Elon University, Elon, North Carolina, USA.; Department of Psychology, Georgia State University, Atlanta, Georgia, USA.; Department of Psychological Medicine, University of Otago, Christchurch, New Zealand.; Dr. D. Y. Patil Biotechnology & Bioinformatics Institute, Dr. D. Y. Patil Vidyapeeth, Pune, India.; University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.; Crystal Springs Uplands School, Hillsborough, California, USA.; Department of Psychology, DePaul University, Chicago, Illinois, USA.; Department of Social Work, North Carolina State University, Raleigh, North Carolina, USA.; Department of Psychiatry, Campbell University, Bules Creek, North Carolina, USA.; School of Social Work, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.; School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.; Comenzar de Nuevo Eating Disorders Treatment and Research Center, Monterrey, Mexico.; Department of Pediatrics, School of Medicine and Health Sciences Tec Salud, Monterrey, Mexico.; Inside Out Institute for Eating Disorders, Sydney, Australia.; Faculty of Medicine and Health, University of Sydney, Sydney, Australia.; Department of Psychiatry, University of Florida College of Medicine, Gainesville, Florida, USA.; Department of Nutrition, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.; Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden.

DOI: 10.1002/ajmg.b.32906

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MeSH Terms: Female, Gender Identity, Humans, Male, Research