不方便的取样:遗传咨询学生研究中的社区参与和恢复性司法方法。

IF 1.9 4区 医学 Q3 GENETICS & HEREDITY
Kimberly Zayhowski, Emily Glanton, Ian M MacFarlane, Rebekah Pratt, Crystal Y Lumpkins, Heather Zierhut
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引用次数: 0

摘要

遗传咨询研究需要全面的方法,因为它经常是临床护理实践的基础。遗传咨询专业的学生在推动专业发展方面发挥着举足轻重的作用,因为他们在遗传咨询界开展的研究中占了很大比例。然而,对遗传咨询师进行方便取样的普遍趋势限制了学生研究项目中观点的多样性。本文从恢复性正义的角度出发,强调社区参与和赋权研究,从而促进研究中更大的包容性和公平性。反思优生学有害意识形态在我们职业中的阴影,强调了放大患者声音和不同经历的必要性。社区参与研究--与直接受遗传咨询影响的个人、家庭和社区合作--超越了传统的研究范式,增强了患者的能力,解决了系统性的不平等问题。将社区参与研究纳入遗传咨询学生项目,旨在增强未来专业人员的能力,使其更好地了解患者的观点和需求,同时努力解决历史遗留的不公正问题。本文探讨了将社区参与研究和恢复性正义原则纳入遗传咨询学术工作的潜在益处和途径,以促进同理心、文化响应能力,并最终形成一种更加以患者为中心的研究和临床护理方法。在遗传咨询学生研究和更广泛的范围内,通过拥抱这一集体旅程,在生产高质量证据的过程中建立真正的伙伴关系,遗传咨询可以成为一种更加公正和包容的实践。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Inconvenient sampling: Community-engaged and restorative justice approaches to genetic counseling student research.

Genetic counseling research requires a comprehensive approach since it frequently serves as the foundation for clinical care practice. Genetic counseling students play a pivotal role in advancing the profession, as they contribute a significant proportion of the research conducted within the genetic counseling community. However, a prevailing trend of convenience sampling of genetic counselors has limited the diversity of perspectives in student research projects. This article promotes a strategy for greater inclusivity and equity in research by emphasizing community-engaged and empowered research through the perspective of restorative justice. Reflecting on the shadow of the harmful ideologies of eugenics in our profession underscores the need to amplify patients' voices and diverse experiences. Community-engaged research-in collaboration with individuals, families, and communities directly impacted by genetic counseling-transcends traditional research paradigms, empowering patients and addressing systemic inequities. Incorporating community-engaged research into genetic counseling student projects aims to empower future professionals to better understand patient perspectives and needs while working toward addressing historical injustices. This article explores the potential benefits and pathways of incorporating community-engaged research and restorative justice principles into genetic counseling scholarly work, promoting empathy, cultural responsiveness, and ultimately, a more patient-centered approach to research and clinical care. By embracing this collective journey toward authentic partnership in the production of high-quality evidence in genetic counseling student research and more broadly, genetic counseling can become a more just and inclusive practice.

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来源期刊
Journal of Genetic Counseling
Journal of Genetic Counseling GENETICS & HEREDITY-
CiteScore
3.80
自引率
26.30%
发文量
113
审稿时长
6 months
期刊介绍: The Journal of Genetic Counseling (JOGC), published for the National Society of Genetic Counselors, is a timely, international forum addressing all aspects of the discipline and practice of genetic counseling. The journal focuses on the critical questions and problems that arise at the interface between rapidly advancing technological developments and the concerns of individuals and communities at genetic risk. The publication provides genetic counselors, other clinicians and health educators, laboratory geneticists, bioethicists, legal scholars, social scientists, and other researchers with a premier resource on genetic counseling topics in national, international, and cross-national contexts.
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