Genetic testing of children for familial cancers: a comparative legal perspective on consent, communication of information and confidentiality.
Genetic testing of children is the subject of ethical and legal debate. On the one hand, the literature emphasises the personal interests and rights of the individual child. On the other, the interests of the parents and the family as a whole are discussed. English law relies by and large on a patient-centred approach where the child has some say about his/her medical care. The view reflected in Anglo-American guidelines, more specifically, is that testing is potentially harmful and may compromise the child's autonomy and confidentiality. This explains the reluctance to submit children to predictive genetic testing. An analysis of Israeli law, however, reflects a different approach, where the benefit to the child is defined more widely. This accords with the general communitarian position adopted by Israeli law, a legal position that reflects the duality of Israeli society in simultaneously promoting both fundamental human rights and family ethics. In practice, however, there may be little difference, as children in both jurisdictions have access to similar genetic services.
Gilbar
Roy
R
School of Law, Queen Mary College, University of London, Mile End Road, London, E1 4NS, UK. r.gilbar@qmul.ac.uk
D022126:Access to Information / Q000941:ethics; D002648:Child; D003142:Communication; D003219:Confidentiality / Q000331:legislation & jurisprudence*; D005192:Family Health; D005817:Genetic Counseling / Q000941:ethics*; D020022:Genetic Predisposition to Disease / Q000235:genetics; D030661:Genetic Privacy / Q000941:ethics / Q000331:legislation & jurisprudence*; D005820:Genetic Testing / Q000379:methods; D006806:Human Rights / Q000331:legislation & jurisprudence; D006801:Humans; D007258:Informed Consent / Q000331:legislation & jurisprudence*; D028701:Patient Rights / Q000331:legislation & jurisprudence*; D014342:Truth Disclosure / Q000941:ethics