Ethical issues in predisposition genetic testing for breast cancer

Abstract

The aim of this dissertation is to examine the ethical issues involved in the predisposition genetic testing for breast cancer. The Introduction will give light on the reality of breast cancer, focusing on statistics of breast cancer deaths in Europe. Recent local statistics pertaining to predisposition genetic testing for breast cancer, will also be presented. A brief historical outline of the localisation of the BRCA1 and BRCA2 genes, the main two genes responsible for breast cancer susceptibility, will also be given. The first chapter will focus on the decision-making process of eligible candidates for predisposition genetic testing, focusing on the possible pros and cons which may accompany such a decision. Since testing is not a means to satiate one’s curiosity regarding genetic status, eligibility criteria will also be pointed out. In addition, the importance of genetic counselling will be emphasised accordingly. Are we, as human beings, trying to ‘play God,’ aiming to predict a future which might be better left unknown and untouched? The following chapter will look into the available surveillance and management options following a positive predisposition test result. Focusing on both positive and adverse possible implications, a critical appraisal of both primary, as well as secondary prevention strategies, will be provided. In order to ascertain protection of autonomy and to respect the principles of beneficence, as well as non-maleficence, the role of genetic counsellors in providing education and support will also be stressed in this chapter. The first part of the third chapter focuses on the disclosure of positive predisposition genetic results to family members. Since genetic information is not exclusively relevant to the woman undergoing testing, but also to her biological relatives, the possibly conflicting rights of both parties will be examined. The resulting medical quandary that may ensue will also be considered. This chapter will then briefly discuss the injustice of genetic discrimination. Finally, the sensitive issue of predisposition genetic testing in minors will be thoroughly scrutinized, focusing on the importance of protecting their best interests as much as possible. Since most children are considered as incapable of providing or withholding consent pertaining to their own health and wellbeing, they are in a somewhat vulnerable state, relying on surrogates to make decisions on their behalf. Should decision-making concerning testing be suspended, leaving it to the discretion of minors once they reach age of majority? To bring this dissertation to a close, the concluding chapter will draw attention to some final considerations, also identifying recommendations for future practice.