if it was your child
Rapid developments in genetic knowledge and technologies increase the ability to test asymptomatic children for late-onset diseases, disease susceptibilities, and carrier status. These developments raise ethical and legal issues that focus on the interests of children and their parents. Although parents are presumed to promote the well-being of their children, a request for a genetic test may have negative implications for children, and the health-care provider must be prepared to acknowledge and discuss such issues with families.
This is grounded in several social concepts: First, the primary goal of genetic testing should be to promote the well-being of the child. Second, the recognition that children are part of a network of family relationships supports an approach to potential conflicts that is not adversarial but, rather, emphasizes a deliberative process that seeks to promote the child’s well-being within this context. Third, as children grow through successive stages of cognitive and moral development, parents and professionals should be attentive to the child’s increasing interest and ability to participate in decisions about his or her own welfare. Therefore, counseling and communication with the child and family about genetic testing should include the following components: (1) assessment of the significance of the potential benefits and harms of the test, (2) determination of the decision-making capacity of the child, and (3) advocacy on behalf of the interests of the child.
Considering the above, I think that providers who receive requests for genetic testing in children must weigh the interests of children and those of their parents and families. The provider and the family both should consider the medical, psychosocial, and reproductive issues that bear on providing the best care for children. This will require the provider to engage individual families in comprehensive discussions of these issues and to provide them with specific information and recommendations about genetic testing. Because such testing has potential for both great benefit and great harm, and because the availability of tests continues to expand, providers of genetic services will play increasingly important roles in counseling families about the suitability of genetic testing for their children.
What is your opinion about this? Would your opinion change if it was your child rather than someone else’s?
