This paper discusses the presentation I held at the symposium on genetics during 
the 4th European Breast Cancer Conference held in Hamburg in March 
2004.Primarily, the goals and working methods of the advocacy group specialised 
in Hereditary Breast/Ovarian Cancer of the Dutch Breast Cancer Patient 
Organisation known as BorstkankerVereniging Nederland (BVN) are explained. 
Furthermore, some specific individual problems that mutation carriers might 
encounter before and after BRCA1/2 susceptibility testing are discussed. These 
include: dilemmas in choosing preventive interventions, dealing with the 
psychological impact of knowing you are a mutation carrier, dealing with the 
social implications of being genetically at risk, an example of insurance 
discrimination. In addition, some controversial social and ethical issues that 
are currently under debate are highlighted, such as the issue of the European 
patenting of the breast cancer susceptibility genes BRCA1 and BRCA2. Since this 
topic could also become relevant for other gene-related diseases, society as a 
whole has to consider the ethical and social implications related to the 
patenting of human genes in general. Another ethical area of debate is the 
controversial issue of prenatal BRCA testing and the choice of pregnancy 
termination.Finally, the Working Party pleads for the international co-operation 
and exchange of data and experience among professionals as well as patients. It 
appears that professionals in different European countries tend to advise on 
different risk management strategies and treatments and as such, the Working 
Party strongly advocates the international standardisation of risk management 
and treatment of mutation carriers. In this respect, specific attention should 
be given to a group that has had a non-informative or negative BRCA test result, 
because this group is still considered to be at high risk to develop the 
disease.