Ethical, Social and Economic Issues in Familial Breast Cancer: A Compilation of Views from the E.C. Biomed II Demonstration ProjectReport as inadecuate

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Disease Markers - Volume 15 1999, Issue 1-3, Pages 125-131

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

Received 9 December 1999; Accepted 9 December 1999

Copyright © 1999 Hindawi Publishing Corporation. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.


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.

Author: Michael Steel, Elizabeth Smyth, Hans Vasen, Diana Eccles, Gareth Evans, Pål Møller, Shirley Hodgson, Dominique Stoppa-Lyonnet,



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