Blackwell Reference Online

Extract

The right side of a young boy's face stares from the cover of the June 2002 issue of the Atlantic Monthly. His large, dark eye arrests and holds the viewer. His expression is somber – innocent yet veiled in sadness. The lighting in the photo draws one's eye to the perfect beauty of his toddler cheek, his tousled hair, his exquisitely youthful features. One cannot help but stare at his face. Even so, words dance in the periphery of one's vision: “Save their son's life.” “Desperate.” Finally, the reader's eyes are drawn downward to the title of the story that attends this face: “Cloning Trevor.”Trevor's story is poignant and deeply moving. At two years old, he suffers from X-linked adrenoleuko-dystrophy (ALD), a relatively rare genetic disorder that will ravage his young brain and take his life before he reaches his teens. Trevor joins a growing community of other children who play a particular role in the public debate about health care. Time and again, developments in biotechnology present us with an ethical “dilemma.” Arguments are made, analyses offered, panels are commissioned. But often, into the rancorous debates, a silent image rises. It is the face of a child, a child like Trevor, sick and perhaps dying.These faces silence the discussion. Wordlessly, they appeal: permit the research to go forward, allow federal funding, eliminate public oversight. Without argument, they persuade. ... log in or subscribe to read full text