Ethical, Social and Economic Issues in Familial Breast Cancer: a compilation of views from the E.C. Biomed II Demonstration Project

Article type: Research Article

Authors: Steel, Michael | Smyth, Elizabeth | Vasen, Hans | Eccles, Diana | Evans, Gareth | Møller, Pål | Hodgson, Shirley | Stoppa-Lyonnet, Dominique | Chang-Claude, Jenny | Caligo, Maria | Morrison, Patrick | Haites, Neva

Affiliations: School of Biology, Division of Medical Science and Human Biology, University of St Andrews, Fife KY16 9TS, Scotland, UK | Foundation for the Detection of Hereditary Tumours, c/o University Hospital, Rijnsburgerweg 10, 2333 AA Leiden, The Netherlands | CRC Genetic Epidemiology Research Group, Wessex Regional Genetics Service, Southampton, SO9 4HA, UK | Department of Medical Genetics, St Mary's Hospital, Hathersage Road, Manchester M13 0JH, UK | The Norwegian Radium Hospital, N-0310, Oslo, Norway | Division of Medical and Molecular Genetics, Guy's Hospital, London Bridge, London SE1 9RT, UK | Unité de Génétique Oncologique, Institut Curie, Section Medicale, 26 Rue d'Ulm, 75231 Paris cedex 05, France | Division of Epidemiology, German Cancer Research Centre, Im Neuenheimer Feld 280, D-69120 Heidelberg, Germany | Institute of Pathology, University of Pisa, Via Roma 57, 56126, Pisa, Italy | Department of Medical Genetics, City Hospital, Belfast BT9 7AB, UK | Department of Medicine and Therapeutics (Medical Genetics), Aberdeen University Medical School, Foresterhill, Aberdeen AB25 2ZD, Scotland, UK

Note: [] Correspondence: Dr. Michael Steel, School of Biology, Division of Medical Science and Human Biology, University of St Andrews, Fife KY16 9TS, Scotland, UK

Abstract: Demand for clinical services for familial breast cancer is continuing to rise across Europe.  Service provision is far from uniform and, in most centres, its evolution has been determined by local conditions, specifically by local research interests, rather than by central planning.  However, in a number of countries there is evidence of progress towards co-ordinated development 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 these developments. In most countries for which relevant data are available, there is a distinct bias towards higher social class among those who avail themselves of clinic facilities (in line with findings from many other health-promotion initiatives).  This should be addressed when considering future organisation of clinical services. Molecular genetic studies designed to identify the underlying mutations responsible for familial breast cancer are not generally regarded as part of the clinical service and are funded through research grants (if at all).  Economic considerations suggest that there is a case for keeping this policy under review. Familial cancers throw into sharp relief certain ethical and legal issues that have received much recent attention from government advisory bodies, patients' representatives, professional commentators and the popular media.  Two are of particular importance; first, the right to gain access to medical records of relatives, in order to provide accurate risk assessment for a given family member, versus the right to privacy in respect of personal medical information and, second, the obligation (or otherwise) to inform family members of their risk status if they have not actively sought that knowledge.  The legal position seems to vary from country to country and, in many cases, is unclear.  In view of pressures to establish uniform approaches to medical confidentiality across the EC, it is important to evaluate the experience of participants in this Demonstration Programme and to apply the principle of "non-malfeasance" in formulating regu-lations that should govern future practice in this field. Data on economic aspects of familial breast cancer are remarkably sparse and outdated.  As evidence accrues on the influence of screening and intervention programmes on morbidity and mortality, there is a strong case for evaluating the cost-effectiveness of different models of service provision.

Journal: Disease Markers, vol. 15, no. 1-3, pp. 125-131, 1999