The Decision to Be Tested

The process of genetic testing can challenge traditional concepts of autonomy and privacy. The desire to be tested on the part of one individual can place pressure on other family members if their cooperation is required for the test to be done. In testing for familial cancers, for example, it is often necessary for a family member who is already affected to be tested first to identify the specific disease-associated mutation in the family. If the affected family member refuses to cooperate, that refusal can frustrate the desire of other family members to learn about their risk. This need to identify an index case also makes it difficult for an individual who wishes to be tested to keep that decision private.

Some authors have advanced the concept of relational responsibility as playing a key role in decisions regarding testing (Burgess and d'Agincourt-Canning). This ethical concept emphasizes that decisions about genetic testing occur within complex social relationships that are embedded in and shaped by notions of responsibility to specific others. Thus, although testing guidelines often emphasize that the decision whether to undergo genetic testing should be solely that of the individual for his or her own purposes and free from coercion by a spouse or another family member, research suggests that in reality people often make decisions about testing on the basis of the wishes and desires of others, primarily close family members, about whom they care deeply. Rosamund Rhodes has taken the notion of relational responsibility further, arguing that individuals have a moral duty to pursue genetic information about themselves, especially in cases in which that information has ramifications for others, such as spouses or children (Rhodes).

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