Psychotherapy and Genetic Illness
The completion of the Human Genome Project (HGP) and the on-going advances in genetic
science mean that more people will become aware of their genetic risk. While the ‘lived
experience’ is increasingly acknowledged as being significant to wellbeing, it is often
overlooked in genetic medicine. This study presents a deeper understanding into the nature of
genetic illness by illuminating the world of experience and by exploring the question of
meaning in relation to carriers of a genetic mutation on the fragile X gene (FMR1), which is
responsible for a family of disorders (FXD) including fragile X syndrome (FXS). A
psychological approach to genetic counselling has evolved to meet the needs of those
confronting genetic risk yet significant challenges in genetic counselling have been identified
which suggests a deficit in the care available to genetic carriers. Three individuals, all female
fragile X carriers diagnosed at least three years before the time of the study, were invited to
participate in semi-structured interviews. An Interpretative Phenomenological Analysis (IPA)
was used to elicit a nuanced analysis of individual narratives and, using an Object Relations
framework the study examines the implicit meaning of a fragile X diagnosis thus illustrating
how a diagnosis of a genetic condition might manifest in the psyche.
The study found that an FXS diagnosis in their children was experienced as deeply traumatic
for the participants and the feeling of unconnectedness was experienced in their journey within
an unresponsive medical system, thereby exacerbating the trauma. The study suggests that
anxiety arising out of a genetic diagnosis, which is experienced as a trauma, cannot be fully
understood without the acknowledgement of the unconscious processing of loss. The study
addresses the paucity of psychotherapy research into the experiences of genetic carriers and
offers new insight into genetic disease. The study recommends additional psychotherapeutic
support in the clinical setting for those confronting genetic illness as well as further research
using other psychotherapy frameworks to explore the experiences of genetic carriers.
Tania Kacperski