Adolescents, Graduated Autonomy, and Genetic Testing

Autonomy takes many shapes. The concept of “graduated autonomy” is conceived as comprising several unique features: (1) it is incremental, (2) it is proportional, and (3) it is related to the telos of the life stage during which it occurs. This paper focuses on graduated autonomy in the context of genetic testing during adolescence. Questions can be raised about other life stages as well, and some of these questions will be addressed by discussing a possible fourth characteristic of graduated autonomy, that is, its elasticity. Further scholarship and analysis is needed to refine the concept of graduated autonomy and examine its applications. “There is no steady… progress in this life; we do not advance through fixed gradations, and at the last one pause through infancy's unconscious spell, boyhood's thoughtless faith, adolescence' doubt (the common doom), then skepticism, then disbelief, resting at last in manhood's pondering repose of If. But once gone through, we trace the round again; and are infants, boys, and men, and Ifs eternally. Where lies the final harbor, whence we unmoor no more?” Herman Melville 1. Introduction Spinning, weaving, and severing the threads of life, three divine sisters known as “the Fates” were held accountable for human destiny in the era of Greek mythology. Millennia later, in the era of chromosome testing, we are still learning how genetic fibers contribute to life’s intricate tapestry. Patterns, of course, are not determined by threads alone. To a greater or lesser degree, we exercise autonomy and assume moral responsibility for choosing our goals and charting our course. We can even decide how familiar we want to become, through DNA testing, with our own genetic material. Autonomy is a means of inspiring choice and guiding decisions, but it is not, I submit, an all-or-nothing proposition. Drawing upon various developmental theories, this paper introduces the concept of graduated autonomy, identifies its core elements, and explores its application to adolescent genetic testing. It then reviews genetic testing recommendations by various professional and political bodies and compares them for consistency with criteria for graduated autonomy. Three preliminary observations are in order. First, this discussion is limited to genetic testing and does not embrace genetic research or genomic therapy. Second, issues of genetic testing, autonomy, and children’s rights are global in scope. Principles, position papers, and pronouncements have been issued by national, supranational, and international agencies including the American