On not wanting to know and not wanting to inform others: choices regarding predictive genetic testing

Abstract

Recent advancement in genetics testing for late-onset diseases raises fundamental decision dilemmas. The first study surveyed people’s willingness to undergo predictive testing to find out about their own predisposition for certain incurable, late-onset diseases. The second study investigated the respondents’ willingness to be tested as a function of the base rate of the disease, test diagnosticity, and the availability of treatment for the disease. In addition we surveyed (in the first study) people’s willingness to disclose to others personal information about their genetic predisposition. The findings show that people often prefer not to know, as if they are choosing “protective ignorance”. Respondents’ verbal justifications of their choices were also analyzed. Respondents offered emotional, cognitive-instrumental, and strategic reasons for their preferences. The findings are compared with other issues in behavioral decision theory, including attitudes towards uncertainty and desire for control. The implications of the findings for policies and legislation on genetic tests are also considered.