There are some situations where the desires of the parent, regardless of how well meaning, may not be in the best interest of the child. In the case of pre-symptomatic genetic testing, a parent often has a need to know what the genetic status of a child is, but that information may or may not be beneficial to the child, and even could be harmful. The purpose of an informed consent process for pre-symptomatic testing is to enable individuals to make decisions about whether they want this information, and to consider how it might affect how they live their lives. A child who has undergone genetic testing will never have the option not to know the results of that information. A positive test result in a child may result in potentially serious psychosocial affects on relationships, family, school performance, and self-concept. This is particularly true if the child has watched a great deal of suffering on the part of the parent. A negative test result can lead to survivor guilt or feelings of being ostracized from affected family members. Many adults choose not to undergo testing due to the psychological burden of incorporating a test result into their lives and futures, and opponents of predictive genetic testing in children feel that children should be offered that same freedom from knowledge.
Personal experience can also interfere with a child's ability to understand the complexities of a positive result, or the reassurance of a negative result. For example, a positive DNA test for the genes associated with Breast and Ovarian Cancer syndrome confers a lifetime risk of developing breast or ovarian cancer of approximately 50 to 80 percent, not 100 percent. Conversely, a negative test result for this child reveals that her risk of breast cancer is not zero, but rather that of the general population, which is approximately 10 percent. A child who has watched her mother die from breast cancer may view this positive result as a prediction of her future and a death sentence, instead of indicating an increased risk. This is a heavy burden to place on a child who is already struggling with the loss of a parent.
The nature of genetic material presents an additional challenge to testing individuals of any age, but these issues can be magnified when dealing with children. By definition, genetic testing often reveals information about other family members, and healthcare providers should consider prior to testing how that information will be addressed. Specifically, genetic testing can reveal cases of non-paternity that can have an adverse affect on the relationship between parent and child.
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