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

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dc.contributor.authorMacDermod C.
dc.contributor.authorPettie M.A.
dc.contributor.authorCarrino E.A.
dc.contributor.authorGarcia S.C.
dc.contributor.authorPadalecki S.
dc.contributor.authorFinch J.E.
dc.contributor.authorSanzari C.
dc.contributor.authorKennedy H.L.
dc.contributor.authorPawar P.S.
dc.contributor.authorMcgough M.M.
dc.contributor.authorIWashita A.
dc.contributor.authorTakgbajouah M.
dc.contributor.authorCoan D.
dc.contributor.authorSzakasits L.
dc.contributor.authorGoode R.W.
dc.contributor.authorWu Y.-K.
dc.contributor.authorReyes-Rodriguez M.L.
dc.contributor.authorVacuan E.M.T.C.
dc.contributor.authorKennedy M.A.
dc.contributor.authorCleland L.
dc.contributor.authorJordan J.
dc.contributor.authorMaguire S.
dc.contributor.authorGuintivano J.D.
dc.contributor.authorGiusti-Rodriguez P.
dc.contributor.authorBaker J.H.
dc.contributor.authorThornton L.M.
dc.contributor.authorBulik C.M.
dc.date.accessioned2024-11-19T05:30:26Z
dc.date.available2024-11-19T05:30:26Z
dc.date.copyright2022
dc.date.issued2023-02-08en
dc.description.abstractWe 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.
dc.description.grantOrganisation: (BBRF) Brain and Behavior Research Foundation Organisation No: 100000874 Country: United States
dc.description.grantOrganisation: (ISONG) International Society of Nurses in Genetics Organisation No: 100014256 Country: United States
dc.description.grantNo: 1645421 Organisation: (NSF) National Science Foundation Organisation No: 100000001 Country: United States
dc.description.grantNo: 538-2013-8864 Organisation: (VR) Vetenskapsradet Organisation No: 501100004359 Country: Sweden
dc.description.grantNo: R01MH118278 Organisation: (NIMH) National Institute of Mental Health Organisation No: 100000025 Country: United States
dc.description.grantNo: R01MH119084 Organisation: (NIMH) National Institute of Mental Health Organisation No: 100000025 Country: United States
dc.description.grantNo: R01MH120170 Organisation: (NIMH) National Institute of Mental Health Organisation No: 100000025 Country: United States
dc.description.grantNo: R01MH124871 Organisation: (NIMH) National Institute of Mental Health Organisation No: 100000025 Country: United States
dc.description.grantNo: R276-2018-4581 Organisation: Lundbeckfonden Organisation No: 501100003554 Country: Denmark
dc.identifier.citationAmerican Journal of Medical Genetics, Part B: Neuropsychiatric Genetics. Vol.189(5), 2022, pp. 163-173.
dc.identifier.doihttps://dx.doi.org/10.1002/ajmg.b.32906
dc.identifier.institution(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
dc.identifier.institution(Pettie, Kennedy) Department of Pathology and Biomedical Science, University of Otago, Christchurch, New Zealand
dc.identifier.institution(Carrino) Department of Psychology and Neuroscience, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
dc.identifier.institution(Garcia, Sanzari) Department of Psychology, University at Albany, State University of New York, Albany, NY, United States
dc.identifier.institution(Padalecki) Elon University, Elon, NC, United States
dc.identifier.institution(Finch) Department of Psychology, Georgia State University, Atlanta, GA, United States
dc.identifier.institution(Kennedy, Cleland, Jordan) Department of Psychological Medicine, University of Otago, Christchurch, New Zealand
dc.identifier.institution(Pawar) Dr. D. Y. Patil Biotechnology & Bioinformatics Institute, Dr. D. Y. Patil Vidyapeeth, Pune, India
dc.identifier.institution(Mcgough) University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
dc.identifier.institution(Iwashita) Crystal Springs Uplands School, Hillsborough, CA, United States
dc.identifier.institution(Takgbajouah) Department of Psychology, DePaul University, Chicago, IL, United States
dc.identifier.institution(Coan) Department of Social Work, North Carolina State University, Raleigh, NC, United States
dc.identifier.institution(Szakasits) Department of Psychiatry, Campbell University, Bules Creek, NC, United States
dc.identifier.institution(Goode) School of Social Work, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
dc.identifier.institution(Wu) School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
dc.identifier.institution(Vacuan) Comenzar de Nuevo Eating Disorders Treatment and Research Center, Monterrey, Mexico
dc.identifier.institution(Vacuan) Department of Pediatrics, School of Medicine and Health Sciences Tec Salud, Monterrey, Mexico
dc.identifier.institution(Maguire) Inside Out Institute for Eating Disorders, Sydney, Australia
dc.identifier.institution(Maguire) Faculty of Medicine and Health, University of Sydney, Sydney, Australia
dc.identifier.institution(Giusti-Rodriguez) Department of Psychiatry, University of Florida College of Medicine, Gainesville, FL, United States
dc.identifier.institution(Bulik) Department of Nutrition, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
dc.identifier.institution(Bulik) Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden
dc.identifier.pubmedid35785430 [https://www.ncbi.nlm.nih.gov/pubmed/?term=35785430]
dc.identifier.urihttps://lowitja.intersearch.com.au/handle/1/748
dc.relation.ispartofAmerican Journal of Medical Genetics, Part B: Neuropsychiatric Genetics
dc.subject.keywordsResearch ethics
dc.subject.keywordsMental health
dc.subject.keywordsGenetics
dc.titleRecommendations to encourage participation of individuals from diverse backgrounds in psychiatric genetic studies.
dc.typeArticle

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