Identifying the psychosocial barriers and facilitators associated with the uptake of genetic services for hereditary cancer syndromes: a systematic review of qualitative studies

Despite evidence supporting genetic testing's utility in hereditary cancer risk management, uptake remains low among at-risk relatives of a hereditary cancer patient. The qualitative systematic review aims to identify the psychosocial barriers and facilitators associated with the uptake of genetic counselling services and/or genetic testing (GC/GT). A systematic literature search was performed across six databases in June 2023, limited to studies published in English from 2010 onwards. Qualitative studies interviewing hereditary cancer patients, their relatives, and/or healthcare providers to identify the psychosocial barriers and facilitators associated with the uptake of genetic testing for hereditary cancer syndrome were eligible for inclusion. A thematic analysis was conducted on the extracted data from 41 eligible qualitative studies. 54% of the studies were from the United States and 75% of the participants were female. 14 psychosocial barriers and nine facilitators to the uptake of genetic testing services were identified. The most frequently cited psychosocial barriers to genetic testing uptake were ‘emotional roller coaster’, ‘threat of genetic discrimination’, and ‘no perceived benefit of genetic testing’. In contrast, the most common facilitators were ‘concern for family’, ‘easing personal worries’, and ‘knowledge is empowering’. Our findings reveal complex factors affecting GC/GT service uptake, some with dual effects.