Academic journal article The Hastings Center Report

Genetic Dilemmas and the Child's Right to an Open Future

Academic journal article The Hastings Center Report

Genetic Dilemmas and the Child's Right to an Open Future

Article excerpt

The profession of genetic counseling is strongly characterized by a respect for patient autonomy that is greater than in almost any other area of medicine. When moral challenges arise in the clinical practice of genetics, they tend to be understood as conflicts between the obligation to respect patient autonomy and other ethical norms, such as doing good and avoiding harm. Thus, a typical counseling dilemma exists when a person who has been tested and found to be carrying the gene for Tay-Sachs disease refuses to share that information with siblings and other relatives despite the clear benefits to them of having that knowledge, or when a family member declines to participate in a testing protocol necessary to help another member discover his or her genetic status.

This way of looking at moral issues in genetic counseling often leaves both the counselors and commentators frustrated, for two reasons. First, by elevating respect for patient autonomy above all other values, it may be difficult to give proper weight to other factors, such as human suffering. Second, by privileging patient autonomy and by defining the patient as the person or couple who has come for counseling, there seems no "space" in which to give proper attention to the moral claims of the future child who is the endpoint of many counseling interactions.

These difficulties have been highlighted of late by the surfacing of a new kind of genetic counseling request: parents with certain disabilities who seek help in trying to assure that they will have a child who shares their disability. The two reported instances are in families affected by achondroplasia (dwarfism) and by hereditary deafness. This essay will focus on deafness.

Such requests are understandably troubling to genetic counselors. Deeply committed to the principle of giving clients value-free information with which to make their own choices, most counselors nonetheless make certain assumptions about health and disability--for example, that it is preferable to be a hearing person rather than a deaf person. Thus, counselors typically talk of the "risk" of having a child with a particular genetic condition. Counselors may have learned (sometimes with great difficulty) to respect clients' decisions not to find out if their fetus has a certain condition or not to abort a fetus which carries a genetic disability. But to respect a parental value system that not only favors what most of us consider to be a disability, but actively expresses that preference by attempting to have a child with the condition, is "the ultimate test of nondirective counseling."[1]

To describe the challenge primarily as one that pits beneficence (concern for the child's quality of life) against autonomy (concern for the parents' right to decide about these matters) makes for obvious difficulties. These are two very different values, and comparing and weighing them invites the proverbial analogy of "apples and oranges." After all, the perennial critique of a principle-based ethics is that it offers few suggestions for ranking principles when duties conflict. Further, beneficence and respect for autonomy are values that will always exist in some tension within genetic counseling. For all the reasons I list below, counselors are committed to the primacy of patient autonomy and therefore to nondirective counseling. But surely, most or all of them are drawn to the field because they want to help people avoid or at least mitigate suffering.

Faced with the ethical challenge of parents who wish to ensure children who have a disability, I suggest a different way to look at this problem. Thinking this problem through in the way I suggest will shed light on some related topics in genetics as well, such as sex selection. I propose that, rather than conceiving this as a conflict between autonomy and beneficence, we recast it as a conflict between parental autonomy and the child's future autonomy: what Joel Feinberg has called "the child's right to an open future. …

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