Advancing research collaboration in genetic counselling to improve cascade testing for at-risk relatives of hereditary cancer patients

Genetic testing for cancerpredisposition has implications not only for the individual patient but also for his/her genetic relatives.

There is a consensus that the patients’ relatives should be disclosed this potentially life-saving information, but when and how the message is best conveyed is a longstanding empirical question.

The host lead an ongoing research project on risk disclosure to relatives (the DIRECT-study, www.umu.se/direct).The research visit of Dr.

Álvaro Mendes to Umeå University presents an outstanding opportunity to deepen collaborations between projects addressing the disclosure of genetic risk information to the patients´ families, which both the host and the visiting researcher coordinate.Dr.

Mendes is a senior researcher from University of Porto (Portugal), with expertise in the disclosure of genetic risk information to families and the associated practices and policies.

He is PI for DECIDE and has extensive experience working in international and interdisciplinary contexts, making him an ideal scholar to contribute significantly to the host institution’s ongoing research projects, particularly the DIRECT-study.During his visit, Dr.

Mendes will assist the research team with the following: (a) designing a 5-year follow-up study of the patients included in the DIRECT-study,(b) providing consultancy on an ongoing qualitative study regarding healthcare professionals’ attitudes towards hereditary cancer risk disclosure to at-risk relatives, (c) drafting a survey-based study on healthcare professionals’ attitudes concerning their roles and responsibilities in risk disclosure to relatives (d) tutoring a student in undertaking a systematic review focused on how cascade testing for hereditary cancer syndromes has been assessed in empirical research studies, (e) facilitating two seminars for students, researchers, and healthcare professionals, and (f) collaborating with the host researcher in preparing a joint research application.