Communication of genetic information to family members in hereditary cancers and healthcare providers’ role

Abstract

Abstract Background In hereditary cancers, disclosure of genetic testing and communication of genetic information to family members is crucial to manage their potential cancer risk. In Switzerland, according to privacy law, genetic information can be passed on to at-risk relatives only through the individual identified with the pathogenic mutation but 20-40% of at-risk family members remain unaware of relevant genetic information and less than 50% refer to genetic services. Healthcare providers have a relevant and challenging role in supporting family communication on genetics but this is still limited and not clear. The aim of the study is to explore how mutation carriers’ communicate about genetics within family members and how this is concretely supported in clinical practice. Methods Ongoing qualitative study. Data are collected with distinct focus groups with a purposeful sample of about 30 hereditary breast and ovarian cancer (HBOC) and Lynch syndrome (LS) mutation carriers and 30 relatives from three linguistic areas of Switzerland. The sample is diversified in terms of gender, clinical history and attitude towards family communication. Interviews with 15 healthcare providers routinely involved in genetic counselling are performed, too. Data collection and data analysis continue iteratively until data saturation according to constant comparative method. Results Qualitative data from focus groups and interviews show that family communication of genetic information is complex, affected by a wide variety of factors and closely interconnected with the disease condition. Communication to family members takes place according to different patterns and changes along the trajectory of life and illness. Healthcare providers play an important role. Conclusions Supporting communication of genetic information within family members is a challenging aspect of genetic healthcare and risk communication. Research about communication on genetics is timely and essential to implement interventions that can enhance cascade testing and genetic information for cancer prevention and control in clinical practice and for multilevel public health initiatives. Legal entity responsible for the study The authors. Funding Has not received any funding. Disclosure All authors have declared no conflicts of interest.