Ethics of Genetic Testing In Children/Minors

Filed in archive Diagnostics, Methodologies and Instrumentation , Genomics, Proteomics and Bioinformatics on January 16, 2008

Now that genetic markers for certain diseases have already been established, should children/minors be allowed to undergo genetic testing , even when there are no means to reduce the risk until they are adults?

Proponents of testing minors have argued there is harm in uncertainty and withholding information and the potential for later misdiagnosis. Other arguments in favor of testing include the fostering of autonomous decision making abilities. Additionally, many argue that parents and their children are more likely than health care professionals to most appropriately asses the risks and benefits of testing an individual child.

Those opposed to testing argue that the development of mature decision-making is variable during adolescence and letting parents make testing decisions for their minor children violates the future autonomy of offspring. Others cite potential adverse psychological consequences to early testing including increased disease-related distress and anxiety, distortion of family relationships, interference in normal development of self-concept and feelings of unworthiness.

This ethical issue has been addressed in a survey study published online in the American Journal of Medical Genetics.

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