ArticleAmerican journal of medical genetics. Part A2009
When to tell and test for genetic carrier status: perspectives of adolescents and young adults from fragile X families.
Article in American journal of medical genetics. Part A, 2009. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
What it found
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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.
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Who cites it
14 citing papers in PubMed, 26 citations in OpenAlex.
- Steroid Sulfatase Deficiency: Clinical Manifestations and Psychological Aspects in Light of Current Evidence.Clinical, cosmetic and investigational dermatology · 2026Review
- Experiences of adolescents and their parents after receiving adolescents' genomic screening results.Journal of genetic counseling · 2022Article
- Decisional conflict among adolescents and parents making decisions about genomic sequencing results.Clinical genetics · 2020Article
- Experiences of Women Who Have Had Carrier Testing for Duchenne Muscular Dystrophy and Becker Muscular Dystrophy During Adolescence.Journal of genetic counseling · 2018Article
- Family Communication and Cascade Testing for Fragile X Syndrome.Journal of genetic counseling · 2016Article
- Duchenne Muscular Dystrophy: a Survey of Perspectives on Carrier Testing and Communication Within the Family.Journal of genetic counseling · 2016Article
- 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
- Adolescents, graduated autonomy, and genetic testing.Genetics research international · 2012Article
- Parents' communication with siblings of children affected by an inherited genetic condition.Journal of genetic counseling · 2011Article
- Extended family impact of genetic testing: the experiences of X-linked carrier grandmothers.Journal of genetic counseling · 2011Article
- Communication of genetic risk information to daughters in families with fragile X syndrome: the parent's perspective.Journal of genetic counseling · 2011Article
- More appreciation of life or regretting the test? Experiences of living as a mutation carrier of Huntington's disease.Journal of genetic counseling · 2011Article
- Genetic risk communication: experiences of adolescent girls and young women from families with fragile X syndrome.Journal of genetic counseling · 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 2 institutions in 1 country.
Funding
Abstract
We report here on our findings from adolescent and young adult females (ages 14-25) with a family history of fragile X syndrome regarding their perceptions of the optimal ages for (1) learning fragile X is inherited, (2) learning one could be a carrier for fragile X, and (3) offering carrier testing for fragile X. Three groups were enrolled: those who knew they were carriers or noncarriers and those who knew only they were at-risk to be a carrier. Only 2 of the 53 participants felt that offering carrier testing should be delayed until the age of 18 years. Participants who knew only that they were at-risk to be a carrier provided older optimal ages for offering carrier testing than those who knew their actual carrier status. Participants did not express regret or negative emotions about the timing of the disclosure of genetic risk information regarding their own experiences. Participants' reasoning behind reported ages for informing about genetic risk and offering carrier testing varied depending on what type of information was being disclosed, which carrier status group the participant belonged to, and the preferred age for learning the information. Study findings suggest that decisions regarding the timing to inform about genetic risk and offer testing should be tailored to the individual needs of the child and his/her family.
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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.