ABSTRACT
Paternalism is exercised by parents in making decisions with regard to the genetic testing of children and in caring for an affected child, and by the state in the resources allocated and the type of services provided. Many factors influence the exercise of paternalism by parents such as their understanding of the disease condition in question and their capacity to handle the consequences for family relationships of the information they have. Factors that influence the exercise of paternalism by the state include the cost effectiveness in terms of measurable health gain of providing genetic services compared with other services, and of particular services such as family counselling within the genetic services overall.
In this field, what is regarded as appropriate paternalism may not be linked primarily to the best interests of the child. There are, in any case, likely to be a number of views on what are the best interests of the child. To date, children’s own views in this regard have not been satisfactorily sought.
These considerations are discusssed, as well as the importance of the rights of even young children to be informed and consulted when there is a question of testing for genetic conditions, and of the proper inclusion of their feelings and thoughts along with the views of others in arriving at family decisions. The state has a similar duty to find ways of bringing the experiences of whole families to bear upon the exercise of its powers in matters concerning testing for genetic conditions and the provision of related services.
