Objectives of genetic counselling: differing views of purchasers, providers and users

Abstract

This study aimed to compare the views of purchasers, providers and users about the objectives of genetic counselling. A modified Delphi technique was used, incorporating two postal questionnaires that were sent to six study groups with a three-month interval: purchasers (public health doctors (n=37) and regional advisers in general practice (n=35)); providers (clinical geneticists [n=33) and genetic counsellors (n=25)); and users (out-patients (n=36) and members of genetic support groups (n=32)). The response rate forthe first questionnaire was 115/198 (58 per cent) and for the second, 102/198 (52 per cent). The first questionnaire asked an open-ended question about what the objectives of genetic counselling should be and asked respondents to rank order them. The second questionnaire summarized the views expressed in the first questionnaire and asked respondents to rank order the most frequently cited and most highly ranked five objectives. The five most frequently cited and highly ranked objectives from Questionnaire One were, in descending order: provide information, give support, facilitate decisionmaking, assess risk and achieve understanding. In response to Questionnaire Two, purchasers differed from roviders and users in rating ‘facilitate decision-making’ more highly than did providers and users. By contrast, providers and users rated ‘give information’ more highly than did purchasers. Purchasers hold different views from providers and users about what the objectives of genetic counselling should be. This raises two questions: (1) Which views are or should be most influential in the future development of genetic counselling? (2) By what processes can more than one view on genetic counselling be integrated?