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Living with genetic risk: effect on adolescent self-concept
Allyn McConkie-Rosell1, Gail A Spiridigliozzi, Elizabeth Melvin
1Division of Medical Genetics, Department of Pediatrics, Duke University Health System, Durham, NC 27710, USA. allyn.mcconkie@duke.edu
Summary
Knowledge of genetic risk for fragile X syndrome impacts adolescent girls' self-concept. Even uncertainty about genetic status poses threats, but certainty can aid adjustment to genetic risk information.
Area of Science:
- Genetics
- Psychology
- Adolescent Health
Background:
- Fragile X syndrome (FXS) is a genetic disorder with implications for family members.
- Understanding the psychological impact of genetic risk knowledge is crucial for adolescent girls and young women.
Purpose of the Study:
- To examine the relationship between self-concept, coping, and adjustment in relation to knowledge of genetic risk for FXS.
- Specifically report findings on self-concept among adolescent girls and young women at varying levels of genetic risk.
Main Methods:
- A multi-group, cross-sectional design was employed.
- Participants included adolescent girls and young women (ages 14-25) from families with diagnosed FXS, categorized as carriers, noncarriers, or at-risk noncarriers.
- Data were collected using the Tennessee Self-Concept Scale (TSCS:2), a visual analog scale, and guided interviews.
Main Results:
- All participants scored within the normal range on the TSCS:2.
- Threats to self-concept were identified in personal, social, and family domains, particularly concerning genetic identity and the meaning of genetic information.
- These threats varied significantly based on genetic risk status.
Conclusions:
- Genetic risk information for FXS is inherently threatening, regardless of carrier status.
- Certainty regarding genetic risk status can positively influence adjustment by enabling girls to confront and process this information.
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