One of the frequently cited risks of genetic susceptibility testing of adults relates to disclosure of results to third parties. Little is known about sharing of information regarding inherited risk within families, or the nature of children's concerns about the privacy of genetic information. As part of a larger study designed to determine how families at increased risk of adult-onset disease would feel about enrolling children in genetic research, we interviewed parents and children (ages 10-17) in 36 families affected by breast cancer or heart disease. This presentation will focus on the following questions: (1) how readily is inherited disease discussed within families; (2) if the child were to have genetic testing, would parents and children want to know the child's test results; and (3) with whom would parents and children be willing to share these results? Parents and children are more likely to discuss the disease that runs in the family when the parent is affected (vs. at-risk). Both parents and children would want to know the child's test results if preventive interventions were available, but the psychological impact of this information on the child was of concern in breast cancer families. Children were very willing to share their test results with other family members and with their doctor, but would not want other children to know if they were at risk. Assessment of a family's patterns and beliefs about sharing personal information should be included in decisions about involving children in genetic research or in clinically-indicated genetic testing.
Learning Objectives: N/A
Keywords: Children and Adolescents, Genetics
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.
The 128th Annual Meeting of APHA