Genetic testing of children for familial cancers: a comparative legal perspective on consent, communication of information and confidentiality

Abstract

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.

Predictive genetic testing in minors for late-onset conditions: a chronological and analytical review of the ethical arguments: Figure 1

“…1D.2 Testing minors breaches their confidentiality when their results are disclosed to their parents (1990–2010:29)1 5–7 9 12–17 19 20 23 24 26 27 29 30 32–34 36 38 40 41 47 50 51…”

“…2A.1 Testing may decrease uncertainty for the individual (1990–2010:30)1 5–7 9 11 13 15 17–23 25 26 29 30 32 34 35 39 40–42 45 52–54…”

“…2A.2 Testing may decrease anxiety for the individual (1990–2010:17)1 5–7 13 16 17 20 24 25 29 34 39 40 44 45 51…”

“…2A.3 Testing can have a positive effect on an individual's identity, self-image and self-esteem (2005–2010:14)5 6 8 9 11 13 16 18 19 22 26 29 36 52…”

Predictive genetic testing for adult‐onset disorders in minors: a critical analysis of the arguments for and against the 2013 ACMG guidelines

“…Benefits highlighted in the literature include: enabling parents to make informed decisions concerning their child's care (1); enabling parents to plan for and prepare their children for the future (6-8); facilitating open, honest, and healthy family relationships (7,8); avoiding or decreasing psychological harms associated with withholding genetic information (e.g. uncertainty, anxiety, depression) (6,7,9); and promoting the development of young peoples' self-esteem, self-identity and capacities for autonomy (6,8,10).…”