Affective and cognitive attitudes, uncertainty avoidance and intention to obtain genetic testing: an extension of the Theory of Planned Behaviour.

To ensure successful implementation of genetic screening and counselling according to patients best interests, the attitudes and motives of the public are important to consider. The aim of this study was to apply a theoretical framework in order to investigate which individual and disease characteristics might facilitate the uptake of genetic testing. A questionnaire using an extended version of the Theory of Planned Behaviour was developed to assess the predictive value of affective and cognitive expected outcomes, subjective norms, perceived control and uncertainty avoidance on the intention to undergo genetic testing. In addition to these individual characteristics, the predictive power of two disease characteristics was investigated by systematically varying the diseases fatality and penetrance (i.e. the probability of getting ill in case one is a mutation carrier). This resulted in four versions of the questionnaire which was mailed to a random sample of 2400 Norwegians. Results showed genetic test interest to be quite high, and to vary depending on the characteristics of the disease, with participants preferring tests for highly penetrant diseases. The most important individual predictor was uncertainty avoidance.

Confidentiality versus duty to inform--an empirical study on attitudes towards the handling of genetic information.

We set out to investigate whether potential relatives want to be informed about the existence of hereditary conditions within their family and under which conditions they want healthcare providers to breach confidentiality to inform them. We hypothesized that the willingness to be informed about a hereditary condition in the family would be influenced by characteristics of the disease and by individual characteristics. Surveys were administered to a Norwegian random sample (N = 2,400) to a Swedish random sample (N = 1,200), and to a Norwegian student sample (n = 607). Eight different disease scenarios were constructed, systematically varying three disease characteristics: fatality, penetrance, and availability of treatment. Results show that a majority of participants wished to be informed about the existence of a hereditary disease within their family. The desire to be informed and the acceptability of breaches of confidentiality were predicted by the treatability of the disease, uncertainty avoidance, and age, but not by self-efficacy or worry.