Living with genetic risk: effect on adolescent self-concept.

American Journal of Medical Genetics. Part C, Seminars in Medical Genetics
A McConkie-RosellA M Lachiewicz

Abstract

The purpose of this study is to describe the interplay of adolescent girls' and young womens' self-concept, coping behaviors, and adjustment associated with knowledge of genetic risk for fragile X syndrome. We will report here findings on self-concept. Using a multi-group cross-sectional design this study focused on girls ages 14-25 years from families previously diagnosed with fragile X syndrome, who knew they were (1) carriers (n = 20; mean age 18.35 years s.d. 2.5), or (2) noncarriers (n = 18; mean age 17.78 years s.d. 2.69), or (3) at-risk to be carriers (n = 15; mean age 17.87 s.d. 3.18). The girls completed the Tennessee Self-Concept Scale (TSCS:2), a visual analog scale, and a guided interview. Total and all subscale scores on the TSCS:2 were in the normal range for all three groups. However, threats to self-concept were found in personal self (physical self, genetic identity, and parental role), social self, and family self (family genetic identity) as they specifically related to the meaning of genetic information and varied based on risk status. Our findings suggest that risk information itself is threatening and for some girls, may be as threatening as learning one is a carrier. Certainty related to genetic risk stat...Continue Reading

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Citations

Mar 12, 2009·Journal of Genetic Counseling·Allyn McConkie-RosellGail A Spiridigliozzi
Dec 6, 2011·Journal of Genetic Counseling·Alice CallardHeather Skirton
Jul 24, 2008·Journal of Pediatric Psychology·Benjamin Wilfond, Lainie Friedman Ross
Dec 17, 2009·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Robert Klitzman
Oct 1, 2011·Journal of Medical Ethics·Lilian Liou CohenSiobhan M Dolan
Sep 30, 2010·Journal of Genetic Counseling·Allyn McConkie-RosellElizabeth Melvin Heise
Jul 4, 2015·American Journal of Human Genetics·Jeffrey R BotkinJoseph D McInerney
Nov 14, 2015·European Journal of Medical Genetics·D F Vears, S A Metcalfe
May 19, 2009·American Journal of Medical Genetics. Part a·Ramsey M WehbeAllyn McConkie-Rosell
Mar 18, 2009·American Journal of Medical Genetics. Part a·Kruti Acharya, Lainie Friedman Ross
Nov 18, 2015·Journal of Genetic Counseling·Amanda PichiniRiyana Babul-Hirji
Jan 18, 2008·American Journal of Medical Genetics. Part C, Seminars in Medical Genetics·Lainie Friedman Ross
Jun 2, 2016·American Society of Clinical Oncology Educational Book·Chimene KesserwanKim E Nichols
Nov 7, 2019·Journal of Community Genetics·Mary-Anne YoungLucy Holland
May 7, 2010·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Christopher H WadeColleen M McBride
Mar 1, 2019·Philosophy, Ethics, and Humanities in Medicine : PEHM·A C PalkD J Stein
Apr 1, 2021·Journal of Genetic Counseling·Lucy HollandKate Thompson
Jul 8, 2021·Journal of Genetic Counseling·Adrienne Sexton, Paul A James

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