In chapter four of her book Genetic Dilemmas, Dena Davis asserts that it is unethical for parents to subject their children to genetic testing for the markers of adult-onset genetic diseases because it places an unfair constraint on a child’s right to an open future. It both removes the child’s ability to choose whether to be tested as an adult and has the potential to negatively alter the overall trajectory of their lives. While the current consensus amongst medical professionals is that such testing should be prohibited (Davis, _____), many concerned parents correctly point out that discouraging such testing creates a conflict of interests between the “beneficence model of patient care and the rights of parents to their own autonomy” (Davis, 75). The availability of commercial online and mail-order genetic testing kits further exacerbates this dilemma by enabling these dissenting parents to obtain test results for their children. Davis ultimately makes a convincing argument that “parental requests for genetic information about their children, when they have no immediate relevance to medical intervention or disease prevention, should generally be resisted” (Davis, 87). This paper seeks to demonstrate that in the case of testing for incurable, late onset genetic diseases, protecting the rights and interests of the child should take precedence over parental autonomy, and that there is a marked need for tighter regulation of commercial genetic testing in order to protect these rights.
Davis bases her argument against testing children for untreatable, late onset genetic diseases (hereafter referred to as “testing”) on the fact that testing is a violation of a child’s right to an open future. Davis feels that while parents do have the liberty to exercise their own reproductive rights and the right to direct the care of their families, they are not entitled to sacrifice the “open futures” or future autonomy of their children in order to do so. (Davis ____).
Testing irreversibly robs children of the right to choose whether to get tested as adults, when they can better understand the implications of test results (Davis ____). Thus it constitutes a violation of a “right in trust,” (a right such as the right to reproduce or vote that the child cannot use yet, but must be protected so that the right may be exercised later) and removes the child’s ability to choose, as his or her parents did, to be tested later on in life for reproductive, marriage, or medical reasons.
She also asserts that testing is a violation of the child’s privacy since she can no longer choose whether to disclose her test results to her parents. Thus, healthcare providers should protect any child’s ability to choose which information she shares with her parents, particularly if that information (as is the case with late onset genetic diseases) only becomes relevant in adulthood and will affect her choices in marriage or reproduction (Davis _____).