Dying Children and Medical Research: Access to Clinical Trials as Benefit and Burden

There is perhaps no greater tragedy in a parent's life than learning that one's child is terminally ill. Today, more than at any time in the past, when conventional treatment fails, dying children are given access to experimental treatment. To a surprising extent, society takes for granted the participation of dying children in medical experiments. In part, this is because we have come to view participation in clinical trials as a potential benefit. This view contrasts sharply with the dominant perception of the mid to late 20th century, which viewed medical research as a potential threat to vulnerable populations. Upon closer scrutiny, both of these perspectives carry with them some important truths. This Article seeks to build upon those truths by undertaking a critical analysis of contemporary ethical and legal policies governing the inclusion of terminally ill children in clinical research.