Influence of Genetic Risk Information on Parental Role Identity in Adolescent Girls and Young Women from Families with Fragile X Syndrome
Using a multi-group cross-sectional design, we explored self-concept related to parental role salience and enactment in 53
young women (14 to 24 years) with knowledge they were either carriers, non-carriers, or could be a carrier of fragile X syndrome
(FXS). Parental role salience included the participants’ desire “to be a mother” and the importance they placed on this role.
Enactment focused on the participants’ views regarding ways to become a mother (reproductive options), parenting a child affected
by FXS, and the development of partner relationships (marriage). Participants completed the FXS Adolescent Interview and the
FX-Visual Analog Scale. Participants’ knowledge of their genetic risk status appears to have influenced both salience and
enactment of the parental role, and the effect varied based on carrier status. For many, knowledge of genetic risk appears
to have led to reappraisal, redefinition, and re-engagement with the goal of becoming a parent. This process was prominent
in those who were carriers and less so in those who were at-risk, and it did not typically occur in those who were non-carriers.
Findings offer valuable insight into the impact of genetic risk information on developing perceptions of the parental role
and offer new directions for genetic counseling with adolescents and young women with a family history of FXS.
Content Type Journal Article
Category Original Research
Allyn McConkie-Rosell, Division of Medical Genetics, Department of Pediatrics, Duke University Health System, Durham, NC 27710, USA
Elizabeth Melvin Heise, Division of Medical Genetics, Department of Pediatrics, Duke University Health System, Durham, NC 27710, USA
Gail A. Spiridigliozzi, Department of Pediatrics, Department of Psychiatry, Duke University Health System, Durham, NC 27710, USA
Endothelial nitric oxide synthase polymorphism G298T in association with oxidative DNA damage in coronary atherosclerosis
Content Type Journal Article
Category Research Note
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