Parental Attitudes and Beliefs regarding the Genetic Testing of Children

Abstract

Objectives: To explore parental attitudes and beliefs about genetic testing of children for conditions that present throughout the life cycle. Methods: Twelve semi-structured focus groups with black and white parents were conducted. Results: Across racial groups, most respondents want access to genetic testing and believe that parents should be the final decision-makers. While most respondents believe it is important to share genetic information with relatives, white respondents want physicians to respect confidentiality absolutely, whereas some black respondents accept physician disclosures in specific situations. Conclusions: Professional policy statements are restrictive about access to predictive genetic testing of children. This conflicts with parental attitudes about who should have decisional authority. While there is consensus among respondents that genetic information should be shared with relatives, respondents disagree as to who should be responsible for disclosure, and when professionals should breach patient confidentiality.