Capturing how individuals perceive genetic risk information: a phenomenological perspective

The prevailing scientific approach to genetic risk information centres around communication of risk in terms of numerical probabilities. However, it is well known that individuals have difficulties in understanding and making sense of this information in their own lives. There is, accordingly, a need to investigate whether any methodologies in psychological research may shed light on how individuals perceive genetic risk information within their specific contexts of family history, personal relationships, lifestyles and future plans. To explore whether hermeneutic phenomenology and methodology may offer a deeper understanding of an individual’s perception of having a hereditary predisposition, we conducted a literature search. We found that Interpretative Phenomenological Analysis may be a fruitful approach to an individual’s lived experiential world. The studies analysed showed how individuals interpret information about genetic risk in the light of their own beliefs about the multiple causes of illness, patterns of heredity and observable risk factors in their families. People’s understanding of their experience is derived from an intricate interconnectedness with others that arises in the context of a world shaped in equal measure by language and culture, on the one hand, and bodies and objects on the other.