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

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 marg...

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Autores principales: MacDermod, Casey, Pettie, Michaela A., Carrino, Emily A., Garcia, Susana Cruz, Padalecki, Sophie, Finch, Jody E., Sanzari, Christina, Kennedy, Hannah L., Pawar, Pratiksha S., Mcgough, Makenna M., Iwashita, Ava, Takgbajouah, Mary, Coan, Danielle, Szakasits, Lindsey, Goode, Rachel W., Wu, Ya‐Ke, Reyes‐Rodríguez, Mae Lynn, Vacuán, Eva María Trujillo Chi, Kennedy, Martin A., Cleland, Lana, Jordan, Jennifer, Maguire, Sarah, Guintivano, Jerry D., Giusti‐Rodríguez, Paola, Baker, Jessica H., Thornton, Laura M., Bulik, Cynthia M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley & Sons, Inc. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9542122/
https://www.ncbi.nlm.nih.gov/pubmed/35785430
http://dx.doi.org/10.1002/ajmg.b.32906
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author MacDermod, Casey
Pettie, Michaela A.
Carrino, Emily A.
Garcia, Susana Cruz
Padalecki, Sophie
Finch, Jody E.
Sanzari, Christina
Kennedy, Hannah L.
Pawar, Pratiksha S.
Mcgough, Makenna M.
Iwashita, Ava
Takgbajouah, Mary
Coan, Danielle
Szakasits, Lindsey
Goode, Rachel W.
Wu, Ya‐Ke
Reyes‐Rodríguez, Mae Lynn
Vacuán, Eva María Trujillo Chi
Kennedy, Martin A.
Cleland, Lana
Jordan, Jennifer
Maguire, Sarah
Guintivano, Jerry D.
Giusti‐Rodríguez, Paola
Baker, Jessica H.
Thornton, Laura M.
Bulik, Cynthia M.
author_facet MacDermod, Casey
Pettie, Michaela A.
Carrino, Emily A.
Garcia, Susana Cruz
Padalecki, Sophie
Finch, Jody E.
Sanzari, Christina
Kennedy, Hannah L.
Pawar, Pratiksha S.
Mcgough, Makenna M.
Iwashita, Ava
Takgbajouah, Mary
Coan, Danielle
Szakasits, Lindsey
Goode, Rachel W.
Wu, Ya‐Ke
Reyes‐Rodríguez, Mae Lynn
Vacuán, Eva María Trujillo Chi
Kennedy, Martin A.
Cleland, Lana
Jordan, Jennifer
Maguire, Sarah
Guintivano, Jerry D.
Giusti‐Rodríguez, Paola
Baker, Jessica H.
Thornton, Laura M.
Bulik, Cynthia M.
author_sort MacDermod, Casey
collection PubMed
description 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.
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spelling pubmed-95421222022-10-14 Recommendations to encourage participation of individuals from diverse backgrounds in psychiatric genetic studies MacDermod, Casey Pettie, Michaela A. Carrino, Emily A. Garcia, Susana Cruz Padalecki, Sophie Finch, Jody E. Sanzari, Christina Kennedy, Hannah L. Pawar, Pratiksha S. Mcgough, Makenna M. Iwashita, Ava Takgbajouah, Mary Coan, Danielle Szakasits, Lindsey Goode, Rachel W. Wu, Ya‐Ke Reyes‐Rodríguez, Mae Lynn Vacuán, Eva María Trujillo Chi Kennedy, Martin A. Cleland, Lana Jordan, Jennifer Maguire, Sarah Guintivano, Jerry D. Giusti‐Rodríguez, Paola Baker, Jessica H. Thornton, Laura M. Bulik, Cynthia M. Am J Med Genet B Neuropsychiatr Genet Review Article 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. John Wiley & Sons, Inc. 2022-07-04 2022-07 /pmc/articles/PMC9542122/ /pubmed/35785430 http://dx.doi.org/10.1002/ajmg.b.32906 Text en © 2022 The Authors. American Journal of Medical Genetics Part B: Neuropsychiatric Genetics published by Wiley Periodicals LLC. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
spellingShingle Review Article
MacDermod, Casey
Pettie, Michaela A.
Carrino, Emily A.
Garcia, Susana Cruz
Padalecki, Sophie
Finch, Jody E.
Sanzari, Christina
Kennedy, Hannah L.
Pawar, Pratiksha S.
Mcgough, Makenna M.
Iwashita, Ava
Takgbajouah, Mary
Coan, Danielle
Szakasits, Lindsey
Goode, Rachel W.
Wu, Ya‐Ke
Reyes‐Rodríguez, Mae Lynn
Vacuán, Eva María Trujillo Chi
Kennedy, Martin A.
Cleland, Lana
Jordan, Jennifer
Maguire, Sarah
Guintivano, Jerry D.
Giusti‐Rodríguez, Paola
Baker, Jessica H.
Thornton, Laura M.
Bulik, Cynthia M.
Recommendations to encourage participation of individuals from diverse backgrounds in psychiatric genetic studies
title Recommendations to encourage participation of individuals from diverse backgrounds in psychiatric genetic studies
title_full Recommendations to encourage participation of individuals from diverse backgrounds in psychiatric genetic studies
title_fullStr Recommendations to encourage participation of individuals from diverse backgrounds in psychiatric genetic studies
title_full_unstemmed Recommendations to encourage participation of individuals from diverse backgrounds in psychiatric genetic studies
title_short Recommendations to encourage participation of individuals from diverse backgrounds in psychiatric genetic studies
title_sort recommendations to encourage participation of individuals from diverse backgrounds in psychiatric genetic studies
topic Review Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9542122/
https://www.ncbi.nlm.nih.gov/pubmed/35785430
http://dx.doi.org/10.1002/ajmg.b.32906
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