Introduction

Kennedy Institute of Ethics Journal 8 (2):vii-x (1998)
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Abstract

In lieu of an abstract, here is a brief excerpt of the content:IntroductionCynthia B. CohenThe explosion of genetic information in recent years raises a fundamental question for us as individuals and as members of various communities: Have we an obligation to know as much as possible about our genes—or should we bypass genetic information, leaving it hidden? A terrible ambivalence grips us when it comes to our genes. We want to respond to the Socratic call to know ourselves by learning what lies on the minute threads of the chromosomes spun into the nuclei of our cells. At the same time, we fear obtaining that information, for it seems functionally equivalent to the oracle at Delphi, revealing a distinct and dangerous knowledge we would rather not have.What is it about genetic knowledge that creates such ambivalence in us? Genetic knowledge is empowering. It offers us the freedom to shape the contours of our lives and those of our families. At the same time, genetic knowledge is disempowering. It bears a peculiar mark of inevitability, telling us that we have no control over our present or future in important respects. Better to hide from such overbearing information than to suffer the assaults on our freedom it seems to create.We can see this ambivalence about genetic knowledge appearing again and again as the field of genetics has grown. Initially, genetics emerged as a tool for understanding how traits and diseases are passed from generation to generation. We used genetic testing mostly to enhance our personal decision making about reproductive matters. It was at this time that our hesitancy about pursuing such testing first arose, for we feared being put into a position of asking such painful questions as, “Knowing what we do about our genes, should we have children?” As the scope of genetic information expanded, we learned to test for genes that could signal the development of such terrible conditions as Huntington’s disease. The possibility of gaining access to such disturbing information exacerbated our fear of genetic knowledge—to some, the certainty of knowing seemed worse than the uncertainty of not knowing. As genetic research has disclosed genes associated with conditions that might, but not necessarily will occur, the uncertainty of knowing, to some, seems worse than that of not knowing. Further, questions focused on individuals, although still pertinent, are being supplanted by broader questions about families and [End Page vii] social groups. When added to the personal agony that genetic information can engender, the specter of egregious discrimination seems to some to outweigh the value of knowing. As the net is cast further and further from the initial genetic inquiries, the call to halt or control certain kinds of genetic testing is growing increasingly loud.Ambivalence about whether to obtain genetic information hovers over the pages of this issue of the Kennedy Institute of Ethics Journal. The authors address both the promise and the threat of the information to be derived from genetic tests. Each examines a different facet of the problem of knowing that vexes the terrain of genetic technology and proposes blueprints for resolving it.Cynthia B. Cohen opens by examining whether genetic testing should be used to unearth information about conditions children might develop later in life. She challenges the current trend within the professional genetics community to keep such information hidden, claiming that the putative psychosocial burdens of receiving that information are outweighed by the psychosocial benefits. Moreover, Cohen maintains that having such information can enhance, rather than impair, the adult autonomy of children. She offers a framework for assessing whether to test in individual cases and maintains that it is the responsibility of parents to make the final decision for their children.A similar response to our ambivalence about obtaining genetic knowledge is given by Robert Wachbroit. In discussing the dilemma caused by pleiotropic genetic tests—those in which a single gene mutation is involved in several apparently unrelated diseases—he favors fully disclosing their dual nature to patients before testing. Wachbroit’s emphasis on openness extends beyond informed consent recommendations, for he maintains that patients have an obligation to know as much about their genetic proclivities as possible. He goes on to confute the common wisdom that genetic information is...

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