Deliverable 5.4 - Regulations and recommendations related to remote and face-to-face genetic counselling quality, access, and sustainability

Genetic counselling is critical to the effective integration of genetic and genomic technologies into cancer care, providing a human interface point that enables patients to make informed decisions about how to engage with these technologies. Missing and poor-quality counselling leads to avoidable costs (e.g. unnecessary genetic tests), inaccurate diagnoses, suboptimal clinical management, and negative psychosocial outcomes in both patients and family members. Common European barriers to high-quality genetic counselling in cancer were identified in preliminary work (Deliverable 5.3 + survey of cancer patient organizations): genetic literacy (of patients and non-genetics health professionals); workforce capacity; and insurance reimbursement. Through a Delphi survey of 77 genetics, oncology, and patient stakeholders from all 27 Member States, five priority European solutions were identified to address these barriers: 1) EU-wide recognition of genetic counsellors 2) Mandatory inclusion of genetics expertise in the creation and updating of oncology guidelines 3) EU system of registration, accreditation, and education for genetic counsellors 4) Mandatory fellowship and continuing education in genetics for oncologists 5) Mandatory full reimbursement of genetic counselling when clinical guidelines are met Feasibility ratings from Delphi survey participants indicate that changes to oncology guidelines and fellowship/continuing education will likely be the most straightforward and quickest to implement. Solutions related to reimbursement and genetic counsellor recognition/registration/accreditation/ education are still high priority but will likely require more extended timeframes and additional effort to ensure sustainable implementation. Immediate next steps are proposed for each solution, including mapping, multi-stakeholder discussion, and economic analysis activities.