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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...
Autores principales: | , , , , , , , , , , , , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
John Wiley & Sons, Inc.
2022
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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. |
format | Online Article Text |
id | pubmed-9542122 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | John Wiley & Sons, Inc. |
record_format | MEDLINE/PubMed |
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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