Ethical, social and economic issues in familial breast cancer: a compilation of views from the EC biomed II demonstration project

Demand for clinical services for familial breast cancer is continuing to ri se across Europe. Service provision is far from uniform and, in most centre s, its evolution has been determined by local conditions, specifically by l ocal research interests, rather than by central planning. However, in a num ber of countries there is evidence of progress towards co-ordinated develop ment and audit of clinics providing risk assessment, counselling, screening and, in some cases, prophylactic intervention. Much important information should emerge from continued observation and comparative assessment of thes e developments. In most countries for which relevant data are available, there is a distinc t bias towards higher social class among those who avail themselves of clin ic facilities (in line with findings from many other health-promotion initi atives). This should be addressed when considering future organisation of c linical services. Molecular genetic studies designed to identify the underlying mutations res ponsible for familial breast cancer are not generally regarded as part of t he clinical service and are funded through research grants (if at all). Eco nomic considerations suggest that there is a case for keeping this policy u nder review. Familial cancers throw into sharp relief certain ethical and legal issues t hat have received much recent attention from government advisory bodies, pa tients' representatives, professional commentators and the popular media. T wo are of particular importance; first, the right to gain access to medical records of relatives, in order to provide accurate risk assessment for a g iven family member, versus the right to privacy in respect of personal medi cal information and, second, the obligation (or otherwise) to inform family members of their risk status if they have not actively sought that knowled ge. The legal position seems to vary from country to country and, in many c ases, is unclear. In view of pressures to establish uniform approaches to m edical confidentiality across the EC, it is important to evaluate the exper ience of participants in this Demonstration Programme and to apply the prin ciple of "non-malfeasance" in formulating regulations that should govern fu ture practice in this field. Data on economic aspects of familial breast ca ncer are remarkably sparse and outdated. As evidence accrues on the influen ce of screening and intervention programmes on morbidity and mortality, the re is a strong case for evaluating the cost-effectiveness of different mode ls of service provision.