ArticleAmerican journal of medical genetics. Part C, Seminars in medical genetics2008
Living with genetic risk: effect on adolescent self-concept.
Article in American journal of medical genetics. Part C, Seminars in medical genetics, 2008. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT03421327 (Genetic Risk), which is not on this map. Cited by 21 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Genetic Risk: Whether, When, and How to Tell Adolescents
Who cites it
21 citing papers in PubMed, 41 citations in OpenAlex.
- Chatbot Intervention and Cancer Risk Knowledge in Adolescents and Young Adults With Cancer Predisposition: A Randomized Clinical Trial.JAMA network open · 2026Trial
- "Let it be as it is": between shock and acceptance - emotional, identity, and cognitive responses to the diagnosis of neurofibromatosis type1.Orphanet journal of rare diseases · 2026Article
- Evidence-based recommendations for delivering the diagnosis of X & Y chromosome multisomies in children, adolescents, and young adults: an integrative review.BMC pediatrics · 2024Review
- Whether, when, and how to communicate genetic risk to minors: 'I wanted more information but I think they were scared I couldn't handle it'.Journal of genetic counseling · 2021Article
- A framework for youth-friendly genetic counseling.Journal of community genetics · 2020Article
- Family Communication Patterns and Challenges of Huntington's Disease Risk, the Decision to Pursue Presymptomatic Testing, and Test Results.Journal of Huntington's disease · 2020Article
- Systematic scoping review of the concept of 'genetic identity' and its relevance for germline modification.PloS one · 2020Article
- Criteria for reporting incidental findings in clinical exome sequencing - a focus group study on professional practices and perspectives in Belgian genetic centres.BMC medical genomics · 2019Article
- Potential use of clinical polygenic risk scores in psychiatry - ethical implications and communicating high polygenic risk.Philosophy, ethics, and humanities in medicine : PEHM · 2019Review
- Experiences of Women Who Have Had Carrier Testing for Duchenne Muscular Dystrophy and Becker Muscular Dystrophy During Adolescence.Journal of genetic counseling · 2018Article
- Experience with genetic counseling: the adolescent perspective.Journal of genetic counseling · 2016Article
- Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents.American journal of human genetics · 2015Review
- Attitude of medical school students in China towards genetic testing and counseling issues in FXS.Journal of genetic counseling · 2013Article
- Counseling adolescents and the challenges for genetic counselors.Journal of genetic counseling · 2012Article
- Challenges of genetic testing in adolescents with cardiac arrhythmia syndromes.Journal of medical ethics · 2012Article
- Influence of genetic risk information on parental role identity in adolescent girls and young women from families with fragile X syndrome.Journal of genetic counseling · 2012Article
- Communication of genetic risk information to daughters in families with fragile X syndrome: the parent's perspective.Journal of genetic counseling · 2011Article
- "Am I my genes?": Questions of identity among individuals confronting genetic disease.Genetics in medicine : official journal of the American College of Medical Genetics · 2009Article
- Genetic risk communication: experiences of adolescent girls and young women from families with fragile X syndrome.Journal of genetic counseling · 2009Article
- When to tell and test for genetic carrier status: perspectives of adolescents and young adults from fragile X families.American journal of medical genetics. Part A · 2009Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 1 institution in 1 country.
Funding
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 status appears to make a positive difference for some girls by allowing them the opportunity to face the challenge of their genetic risk status and to begin to consider the meaning of this information.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.