ABSTRACT

Health care professionals in genetics are usually unwilling to offer predictive genetic testing for children. They are concerned that this might have harmful psychological and social effects with few offsetting benefits. They have reached this conclusion on the basis of the devastating results for some adults of testing for Huntington’s disease (HD), a debilitating and fatal late-onset condition. However, it seem inaccurate to generalize from testing for this unique condition to testing for all late-onset conditions. Each adult-onset condition bears somewhat features and testing for each might therefore involve different sorts of harms and benefits.

A whole complex of factors needs to be considered in weighing the harms and benefits of providing predictive testing for a specific condition to a specific asymptomatic child. These factors include the emotional effects of testing, impact on family dynamics, effect on ability to plan for the future, import for ethical principles, social and economic effects, remoteness of time of onset of condition, degree of probability of incurring the condition, degree of seriousness of the condition, possible future medical benefits of testing, level of maturity of the child, and availability of genetic counselling.

There is tremendous uncertainty about the benefits and harms of providing predictive testing for children, for few empirical studies of this question have been done. In such situations of uncertainty, in which value judgments play an especially significant role, there is a presumption that the decisions of parents should prevail. Parents care most about the welfare of their children, are responsible for 134maintaining their daily lives, and impart values to them. Yet health care professionals have a responsibility to protect children should their parents take inappropriate decisions not in the interests of their children.

Further, we must begin to consider the impact of allowing predictive testing on our underlying social values and cohesiveness as a community. We owe it to our children to promote social policies that provide support and care for those who are vulnerable to future illness.