Interpretative phenomenological analysis and genetic counseling

Abstract

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.