Recommendations to encourage participation of individuals from diverse backgrounds in psychiatric genetic studies.
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Date
2023-02-08
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(MacDermod, Garcia, Padalecki, Finch, Sanzari, Pawar, Takgbajouah, Coan, Szakasits, Goode, Wu, Reyes-Rodriguez, Guintivano, Baker, Thornton, Bulik) Department of Psychiatry, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
(Pettie, Kennedy) Department of Pathology and Biomedical Science, University of Otago, Christchurch, New Zealand
(Carrino) Department of Psychology and Neuroscience, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
(Garcia, Sanzari) Department of Psychology, University at Albany, State University of New York, Albany, NY, United States
(Padalecki) Elon University, Elon, NC, United States
(Finch) Department of Psychology, Georgia State University, Atlanta, GA, United States
(Kennedy, Cleland, Jordan) Department of Psychological Medicine, University of Otago, Christchurch, New Zealand
(Pawar) Dr. D. Y. Patil Biotechnology & Bioinformatics Institute, Dr. D. Y. Patil Vidyapeeth, Pune, India
(Mcgough) University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
(Iwashita) Crystal Springs Uplands School, Hillsborough, CA, United States
(Takgbajouah) Department of Psychology, DePaul University, Chicago, IL, United States
(Coan) Department of Social Work, North Carolina State University, Raleigh, NC, United States
(Szakasits) Department of Psychiatry, Campbell University, Bules Creek, NC, United States
(Goode) School of Social Work, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
(Wu) School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
(Vacuan) Comenzar de Nuevo Eating Disorders Treatment and Research Center, Monterrey, Mexico
(Vacuan) Department of Pediatrics, School of Medicine and Health Sciences Tec Salud, Monterrey, Mexico
(Maguire) Inside Out Institute for Eating Disorders, Sydney, Australia
(Maguire) Faculty of Medicine and Health, University of Sydney, Sydney, Australia
(Giusti-Rodriguez) Department of Psychiatry, University of Florida College of Medicine, Gainesville, FL, United States
(Bulik) Department of Nutrition, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
(Bulik) Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden
(Pettie, Kennedy) Department of Pathology and Biomedical Science, University of Otago, Christchurch, New Zealand
(Carrino) Department of Psychology and Neuroscience, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
(Garcia, Sanzari) Department of Psychology, University at Albany, State University of New York, Albany, NY, United States
(Padalecki) Elon University, Elon, NC, United States
(Finch) Department of Psychology, Georgia State University, Atlanta, GA, United States
(Kennedy, Cleland, Jordan) Department of Psychological Medicine, University of Otago, Christchurch, New Zealand
(Pawar) Dr. D. Y. Patil Biotechnology & Bioinformatics Institute, Dr. D. Y. Patil Vidyapeeth, Pune, India
(Mcgough) University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
(Iwashita) Crystal Springs Uplands School, Hillsborough, CA, United States
(Takgbajouah) Department of Psychology, DePaul University, Chicago, IL, United States
(Coan) Department of Social Work, North Carolina State University, Raleigh, NC, United States
(Szakasits) Department of Psychiatry, Campbell University, Bules Creek, NC, United States
(Goode) School of Social Work, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
(Wu) School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
(Vacuan) Comenzar de Nuevo Eating Disorders Treatment and Research Center, Monterrey, Mexico
(Vacuan) Department of Pediatrics, School of Medicine and Health Sciences Tec Salud, Monterrey, Mexico
(Maguire) Inside Out Institute for Eating Disorders, Sydney, Australia
(Maguire) Faculty of Medicine and Health, University of Sydney, Sydney, Australia
(Giusti-Rodriguez) Department of Psychiatry, University of Florida College of Medicine, Gainesville, FL, United States
(Bulik) Department of Nutrition, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
(Bulik) Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden
Year
2022
Citation
American Journal of Medical Genetics, Part B: Neuropsychiatric Genetics. Vol.189(5), 2022, pp. 163-173.
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American Journal of Medical Genetics, Part B: Neuropsychiatric Genetics
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Organisation: (BBRF) Brain and Behavior Research Foundation Organisation No: 100000874 Country: United States
Organisation: (ISONG) International Society of Nurses in Genetics Organisation No: 100014256 Country: United States
No: 1645421 Organisation: (NSF) National Science Foundation Organisation No: 100000001 Country: United States
No: 538-2013-8864 Organisation: (VR) Vetenskapsradet Organisation No: 501100004359 Country: Sweden
No: R01MH118278 Organisation: (NIMH) National Institute of Mental Health Organisation No: 100000025 Country: United States
No: R01MH119084 Organisation: (NIMH) National Institute of Mental Health Organisation No: 100000025 Country: United States
No: R01MH120170 Organisation: (NIMH) National Institute of Mental Health Organisation No: 100000025 Country: United States
No: R01MH124871 Organisation: (NIMH) National Institute of Mental Health Organisation No: 100000025 Country: United States
No: R276-2018-4581 Organisation: Lundbeckfonden Organisation No: 501100003554 Country: Denmark
Organisation: (ISONG) International Society of Nurses in Genetics Organisation No: 100014256 Country: United States
No: 1645421 Organisation: (NSF) National Science Foundation Organisation No: 100000001 Country: United States
No: 538-2013-8864 Organisation: (VR) Vetenskapsradet Organisation No: 501100004359 Country: Sweden
No: R01MH118278 Organisation: (NIMH) National Institute of Mental Health Organisation No: 100000025 Country: United States
No: R01MH119084 Organisation: (NIMH) National Institute of Mental Health Organisation No: 100000025 Country: United States
No: R01MH120170 Organisation: (NIMH) National Institute of Mental Health Organisation No: 100000025 Country: United States
No: R01MH124871 Organisation: (NIMH) National Institute of Mental Health Organisation No: 100000025 Country: United States
No: R276-2018-4581 Organisation: Lundbeckfonden Organisation No: 501100003554 Country: Denmark
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.Copyright © 2022 The Authors. American Journal of Medical Genetics Part B: Neuropsychiatric Genetics published by Wiley Periodicals LLC.
PubMed ID
35785430 [https://www.ncbi.nlm.nih.gov/pubmed/?term=35785430]
Type
Article
Study type
Subjects
Research ethics
Mental health
Genetics
Mental health
Genetics