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Recommendations to encourage participation of individuals from diverse backgrounds in psychiatric genetic studies
American Journal of Medical Genetics Part B: Neuropsychiatric Genetics ( IF 2.8 ) Pub Date : 2022-07-04 , DOI: 10.1002/ajmg.b.32906
Casey MacDermod 1 , Michaela A Pettie 2 , Emily A Carrino 3 , Susana Cruz Garcia 1, 4 , Sophie Padalecki 1, 5 , Jody E Finch 1, 6 , Christina Sanzari 1, 4 , Hannah L Kennedy 7 , Pratiksha S Pawar 1, 8 , Makenna M Mcgough 9 , Ava Iwashita 10 , Mary Takgbajouah 1, 11 , Danielle Coan 1, 12 , Lindsey Szakasits 1, 13 , Rachel W Goode 1, 14 , Ya-Ke Wu 1, 15 , Mae Lynn Reyes-Rodríguez 1 , Eva María Trujillo Chi Vacuán 16, 17 , Martin A Kennedy 2 , Lana Cleland 7 , Jennifer Jordan 7 , Sarah Maguire 18, 19 , Jerry D Guintivano 1 , Paola Giusti-Rodríguez 20 , Jessica H Baker 1 , Laura M Thornton 1 , Cynthia M Bulik 1, 21, 22
Affiliation  

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.

中文翻译:

鼓励来自不同背景的个人参与精神病学遗传研究的建议

我们展示了精神病学遗传学研究中的创新研究实践,以确保代表来自不同血统、出生时指定的性别、性别认同、年龄、体型和大小以及社会经济背景的个体。由于在精神病学和遗传学方面针对边缘化群体的不当和有害做法的历史,某些身份的人可能对参与研究犹豫不决。然而,他们的参与对于确保多样化的代表性至关重要,因为假设相同的遗传和环境因素会影响所有人口群体中各种精神疾病的风险是不正确的。我们介绍了作为饮食失调遗传学倡议 (EDGI) 的一部分而开发的方法,该研究需要采用量身定制的方法来招募许多国家的不同人群。考虑因素包括研究重点和设计、招募和研究品牌、透明度以及社区投资和所有权。确保参与者的代表性是昂贵的,资助者需要提供足够的支持以实现主要奖项招聘的多样性,而不仅仅是事后补充。基因研究中对多样化样本的需求对于最大限度地降低精神病学和其他健康研究中持续存在的健康差异的风险至关重要。尽管 EDGI 策略是专门为吸引和招募饮食失调患者而设计的,但我们的方法广泛适用于精神病学和其他领域。确保参与者的代表性是昂贵的,资助者需要提供足够的支持以实现主要奖项招聘的多样性,而不仅仅是事后补充。基因研究中对多样化样本的需求对于最大限度地降低精神病学和其他健康研究中持续存在的健康差异的风险至关重要。尽管 EDGI 策略是专门为吸引和招募饮食失调患者而设计的,但我们的方法广泛适用于精神病学和其他领域。确保参与者的代表性是昂贵的,资助者需要提供足够的支持以实现主要奖项招聘的多样性,而不仅仅是事后补充。基因研究中对多样化样本的需求对于最大限度地降低精神病学和其他健康研究中持续存在的健康差异的风险至关重要。尽管 EDGI 策略是专门为吸引和招募饮食失调患者而设计的,但我们的方法广泛适用于精神病学和其他领域。
更新日期:2022-07-04
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