Zayhowski Kimberly, Glanton Emily, MacFarlane Ian M, Pratt Rebekah, Lumpkins Crystal Y, Zierhut Heather
Department of Obstetrics and Gynecology, Boston University Chobanian & Avedisian School of Medicine, Boston, Massachusetts, USA.
Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, Minnesota, USA.
J Genet Couns. 2025 Feb;34(1):e1869. doi: 10.1002/jgc4.1869. Epub 2024 Feb 13.
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.
遗传咨询研究需要一种全面的方法,因为它常常是临床护理实践的基础。遗传咨询专业的学生在推动该专业发展方面发挥着关键作用,因为他们在遗传咨询领域开展的研究中占了很大比例。然而,遗传咨询师采用便利抽样的普遍趋势限制了学生研究项目中观点的多样性。本文通过恢复性司法的视角强调社区参与和赋权研究,倡导一种在研究中实现更大包容性和公平性的策略。反思我们专业中优生学有害意识形态的阴影,凸显了放大患者声音和多样经历的必要性。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——超越了传统研究范式,赋予患者权力并解决系统性不平等问题。将社区参与研究纳入遗传咨询学生项目旨在使未来的专业人员更好地理解患者的观点和需求,同时努力解决历史上的不公正问题。本文探讨了将社区参与研究和恢复性司法原则纳入遗传咨询学术工作的潜在益处和途径,促进同理心、文化敏感性,并最终推动一种更以患者为中心的研究和临床护理方法。通过在遗传咨询学生研究以及更广泛的遗传咨询领域中,在高质量证据的产生过程中迈向真正的伙伴关系这一集体旅程,遗传咨询可以成为一种更公正和包容的实践。