Starr Rachel A, Smith Jonathan A
School of Psychological Sciences, Birkbeck University of London, London, UK.
J Genet Couns. 2025 Jun;34(3):e70061. doi: 10.1002/jgc4.70061.
The role of qualitative methods in healthcare research has gained acceptance over the last 30 years, and there are now a number of well-established approaches available offering a diversity of aims, procedures, and epistemological emphases. This paper focuses on one such approach, Interpretative Phenomenological Analysis (IPA), to provide a discussion and critical overview of its current and future utility for genetic-counseling research. First, the phenomenological and hermeneutic (interpretative) underpinnings of IPA, as well as its methodological commitments to inductive, idiographic, and interrogative working, are considered in the wider contexts of genetic and genomic science, and psychotherapy and counseling research. Then, research using IPA with more direct relevance for genetic counseling is considered in greater depth. This corpus includes those studies that speak to the most frequently endorsed activities of genetic counselors and pass quality evaluations specific to IPA. The literature is organized into three areas: (1) perceptions of genetic risk, (2) how genetic information, such as a diagnosis, personal test, or family history, is understood, and (3) the activity and experience of genetic counseling. Studies concerning perception of risk suggest it is experienced like presence on a radar, becoming more or less prominent or further or nearer from an individual's sense of themselves and their life. Studies concerning the understanding of genetic information imply the importance of multiple contexts in shaping understandings, but also that genetic information can shape experiences of other aspects of life and therefore that contexts may themselves be fluid. IPA used to consider experiences of genetic counseling suggests the importance of expertise in managing uncertainty and the centrality of sense-making in the process for both counselor and counselee. Concluding remarks involve current and future compatibility between IPA and genetic counseling and the call for continuation of what is suggested to be a mutually beneficial dialogue between the two.
在过去30年里，定性方法在医疗保健研究中的作用已得到认可，现在有许多成熟的方法可供使用，这些方法具有不同的目标、程序和认识论重点。本文聚焦于其中一种方法——解释现象学分析（IPA），对其在遗传咨询研究中的当前及未来效用进行讨论和批判性概述。首先，在遗传和基因组科学、心理治疗与咨询研究的更广泛背景下，考虑IPA的现象学和诠释学（解释性）基础，以及其对归纳、个案研究和探究性工作的方法论承诺。然后，更深入地考虑与遗传咨询有更直接相关性的使用IPA的研究。这一研究主体包括那些涉及遗传咨询师最常认可的活动并通过IPA特定质量评估的研究。文献分为三个领域：（1）对遗传风险的认知，（2）对遗传信息（如诊断、个人检测或家族史）的理解方式，以及（3）遗传咨询的活动和体验。关于风险认知的研究表明，它就像雷达上的存在一样被体验，或多或少地突出，或离个人对自己及生活的感觉更近或更远。关于遗传信息理解的研究意味着多种背景在塑造理解方面的重要性，但也表明遗传信息可以塑造生活其他方面的体验，因此背景本身可能是变化的。用于考虑遗传咨询体验的IPA表明，专业知识在管理不确定性方面的重要性，以及意义建构在咨询师和咨询对象过程中的核心地位。结束语涉及IPA与遗传咨询当前及未来的兼容性，以及呼吁继续这两者之间被认为是互利的对话。
