Self‐selection in predictive testing for Huntington's disease

Abstract

Several studies have reported favorable psychological reactions to predictive testing for Huntington's disease (HD). However, few at-risk persons have been tested, and there is evidence that some at-risk people avoid testing because they fear being unable to cope with the information. Favorable psychological reactions may result from self-selection of persons who believe they are better-equipped to handle "bad news." We surveyed 32 at-risk persons who had considered, but not chosen, testing and 66 persons who had been previously tested. Twelve persons decided not to be tested (No group); 20 persons postponed testing until some later date (Maybe group). Of the two untested groups, a significantly greater number of the No group had not been tested because they anticipated problems associated with their emotional reactions. The persons in the Tested group had less often anticipated problems with their emotional reactions; and among the minority who had anticipated some problems, most did not question their ability to cope. We conclude that the Tested persons are psychologically selected for favorable responses to genetic testing. Surveys of health professionals suggest that a sizable minority would disclose genetic disease risk whether or not people want it. Thus, people who would not choose to be tested might be persuaded to do so, or have results thrust upon them. We should be wary about assuming that the generally favorable reactions to HD testing will continue when testing becomes more widespread, as is likely to happen with simplification of the technology and acceptance of these tests by the medical community.

Attitude towards prophylactic surgery and effects of genetic counselling in families with BRCA mutations

“…This effect has a particular bearing on our study population because the majority of family members had already decided to undergo testing prior to genetic counselling. In this context, contributing factors may lie in the psychological robustness of those individuals choosing to take the test in the first place (Lerman et al, 1998), and the adherence to a careful protocol, as observed previously with Huntington's disease (Codori et al, 1994). Secondly, the majority of our carriers (55%) were already affected with cancer at the time of this study.…”

The feasibility of online genetic testing for lung cancer susceptibility: uptake of a web-based protocol and decision outcomes

“…43 Alternatively, others may refuse uptake due to anticipated negative affect. 44 A strong tendency for people to self-select themselves in or out of testing on the basis of their beliefs about their anticipated response to the test result has been observed in the clinical literature. 45,46 The suggestion also is supported by some psychological theories, particularly those based on subjective expected utility theory, 47,48 which argue that outcome expectancies-defined as an individual's expectations about the outcomes or consequences of …”

Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease

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