What can Interpretative Phenomenological Analysis do for genomics?

The use of qualitative methods has been increasingly accepted in health research over the past 30 years. We have reviewed the use of one such approach – Interpretative Phenomenological Analysis (IPA) – in the context of genetic counselling and issues related to genetic and genomic medicine, publishing our findings in the Journal of Genetic Counselling.

IPA is a qualitative methodology which involves foregrounding individuals' subjective knowledge, in order to develop understandings of a phenomenon from a first‐person perspective. Like many qualitative approaches, IPA is concerned with experience, but it involves a particular stance towards learning about experience.

• IPA is phenomenological. This means that experience is explored on its own terms. Preconceptions are resisted in order to focus, inductively, on what it is like for the experiencer.
• IPA is interpretative. This means recognising the role of sense-making in shaping experience, and acknowledging that aspects of experience may not be obviously given on the surface of (for example) a description, but can nonetheless be drawn out by tentatively probing the meanings underlying what is said.
• IPA is idiographic. This means that it prioritises in-depth investigation of each individual's experience independently, before any considerations are made at a group level. This distinguishes IPA from (for example) a method like thematic analysis, which involves identifying patterns within a dataset.

As we have discussed in the Encyclopaedia of Life Sciences, these features of IPA provide a strong basis for understanding issues in genetic and genomic medicine. Our latest article considers the role of IPA in genetic counselling research, identifying studies relating to the most frequently endorsed activities of genetic counsellors.

One topic we found within these studies was perception of genetic risk. IPA was used to explore risk perception in different scenarios, such as living with a known at-risk status in the absence of further testing, and living with a positive test result in the pre‐manifest stage of a genetic condition. These risks (risk of carrying a faulty gene and risk of symptom onset) are different, medically speaking, but there were commonalities across findings.

Risk was understood in terms of illness detectability and visibility, meaning that individuals felt as though they lived with a radar that scanned constantly for the appearance of genetic disease. While hidden, the condition was feared. Nevertheless, imagining life once the condition became detectable – through testing, symptom onset or observation by others – was challenging, as it meant contemplating a world and existence that looked radically different.

Such findings cannot cure genetic illness or reduce genetic risk, but they do point to a way of thinking about risk that could nonetheless be life-changing. Understanding risk experientially, as shaped by how conspicuously it appears in a person's life and future, reveals an aspect that is not fixed – its psychological prominence, which is something individuals may be beneficially supported to reduce.

A second topic addressed in the studies was understanding genetic information. IPA is concerned with experience as embedded in a meaningful world, and is therefore sensitive to personal understandings and their situatedness. This stance is well suited to exploring the way genetic information is understood from different positions and perspectives.

IPA was used to explore understandings of genetic illness in the context of religion, and to compare the viewpoints of patients and clinicians on genetic testing. Findings also highlighted the way that symptoms of a genetic condition could become normalised when present in families, potentially inhibiting the seeking of treatment. Together, this group of studies provided insight into the role of different contextual factors in understanding genetic information, and the relevance of these factors for different individuals or groups. This had implications for healthcare engagement, communication and delivery.

Finally, the studies allowed us to consider the role IPA in the future of genetics and genomic healthcare. There is a growing demand for personalised healthcare that recognises the needs and viewpoints of currently underrepresented populations. This was discussed at a recent event produced by PET (the Progress Educational Trust) in partnership with Our Future Health (see BioNews 1293, 1297 and 1302), and is also reflected in Genomics England's Diverse Data Vision (see BioNews 1194). This demand is coupled with growing recognition that the barriers to enhancing diversity in genomics research are complex, involving as they do a multiplicity of psychological, social, cultural and economic factors.

IPA is ideally suited to addressing these issues, because it involves a concern with the detail of personal experience as situated in a meaningful world, coupled with rigorous commitment to explore that experience in a non‐prescriptive fashion and on its own terms. IPA involves foregrounding individuals' perspectives over dominant discourses or presumed understandings, beginning with a fine-grained analysis of a single case and affording the same attention to each subsequent case independently.

This approach gives IPA great sensitivity to the intricacies of personal perspectives, allowing researchers to tease out factors that may not have been recognised or anticipated previously. In this way, IPA represents a powerful tool for understanding the needs and circumstances of minority or overlooked populations, as well as for understanding novel issues generated by advances in genomics more broadly.

There is a call to involve patients and families in a way that is meaningful for them, in the context of large‐scale, equitable services. At the same time, it is recognised that the healthcare systems into which genomic technology is integrated are as complex, diverse and rapidly changing as the science itself, resulting in significant challenges to their delivery. IPA is sensitive to this need, as it involves paying careful attention to situatedness as part of idiographic investigation. This allows the nuances of individual experience, including the complexities of their context, to be uncovered.

Overall, the genetic counselling research suggests that IPA has considerable utility in supporting genomic science and healthcare. The studies we examined demonstrate the potential of IPA to generate experiential insights that complement clinical and biological knowledge, and are highly relevant for patient care and medical advancement.