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通过反思性和立场性增强遗传咨询研究的严谨性与公正性。

Enhancing rigor and justice in genetic counseling research with reflexivity and positionality.

作者信息

Zayhowski Kimberly, Borle Kennedy, Channaoui Nadine

机构信息

Medical Sciences and Education, Boston University Chobanian and Avedisian School of Medicine, Boston, Massachusetts, USA.

Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, Minnesota, USA.

出版信息

J Genet Couns. 2025 Jun;34(3):e70066. doi: 10.1002/jgc4.70066.

Abstract

In the rapidly evolving landscape of genetic counseling research, acknowledging the dynamic interplay between the researchers and the research is critical. Positionality, which encompasses how researchers' social, cultural, and professional identities intersect with their work, along with reflexive practices that promote self-awareness, emerge as essential tools in promoting transparency, rigor, and ethical integrity in research. In this article, we explore the importance of both positionality and reflexivity in genetic counseling research. By highlighting the impact of researchers' perspectives on study design, data interpretation, and knowledge translation, we seek to underscore how positionality and reflexivity can be used to confront biases and power imbalances in the research process. Our discussion extends to both qualitative and quantitative methodologies, showcasing the role of reflexive and positionality statements in enhancing research credibility, inclusivity, and justice. We have provided actionable guidance and reflective questions for constructing robust positionality statements and documenting reflexivity across research phases. Reflexive research practices may advance justice-oriented evidence that informs clinical practices, research, and the genetic counseling profession more broadly. At the same time, we must balance the need to disclose privilege and biases with the imperative to protect marginalized individuals from potential exploitation and harm, ensuring these disclosures do not reinforce existing power imbalances nor compromise safety and autonomy. By advancing reflexivity and positionality, this article advocates for a justice-centered approach to genetic counseling research, ensuring a more representative and ethically responsible body of knowledge.

摘要

在基因咨询研究快速发展的背景下,认识到研究人员与研究之间动态的相互作用至关重要。立场性,包括研究人员的社会、文化和职业身份如何与其工作相互交织,以及促进自我意识的反思性实践,成为促进研究透明度、严谨性和道德完整性的重要工具。在本文中,我们探讨立场性和反思性在基因咨询研究中的重要性。通过强调研究人员的观点对研究设计、数据解释和知识转化的影响,我们试图强调立场性和反思性如何用于应对研究过程中的偏见和权力不平衡。我们的讨论扩展到定性和定量方法,展示反思性和立场性陈述在提高研究可信度、包容性和公正性方面的作用。我们为构建强有力的立场性陈述以及记录研究各阶段的反思性提供了可操作的指导和反思性问题。反思性研究实践可能会推进以正义为导向的证据,从而更广泛地为临床实践、研究和基因咨询专业提供信息。与此同时,我们必须在披露特权和偏见的必要性与保护边缘化个体免受潜在剥削和伤害的紧迫性之间取得平衡,确保这些披露不会强化现有的权力不平衡,也不会损害安全性和自主性。通过推进反思性和立场性,本文倡导以正义为中心的基因咨询研究方法,确保形成更具代表性和道德责任感的知识体系。

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