A Genetic Counseling Intervention to Facilitate Family Communication About Inherited Conditions

Abstract

This paper describes the development and implementation of the first intervention to facilitate family communication of genetic information based on a genetic counseling model of practice. The intervention is telephone-based and therefore designed to complement face-to-face genetic counseling consultations. It was developed by firstly reviewing the literature and a model of genetic counseling practice, leading to definition of seven core principles underpinning the intervention. A counseling framework based on these principles was developed through iterative role playing and review, tested for consistency with good practice and piloted on ten study participants. It was found to be feasible to implement and consistent with good genetic counseling practice. Implementation included training of the genetic counselors who would deliver the intervention as part of a randomized controlled trial. Noteworthy deviations from good genetic counseling practice were observed, with unexpected additional insights into the ‘black box’ of genetic counseling that may have wider implications and would benefit from further investigation. The intervention is currently being evaluated in a randomized controlled trial, to assess its impact on the number of family members attending genetic services.