ArticleSociology of health & illness2011
Enacting genetic responsibility: experiences of mothers who carry the fragile X gene.
Article in Sociology of health & illness, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 1 of them a synthesis that pooled it.
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
15 citing papers in PubMed, 1 synthesis or guideline pooled it, 48 citations in OpenAlex.
- Does theFMR1 gene affect IVF success?Reproductive biomedicine online · 2019Pooled it
- First report of an inherited MYCBP2 neurodevelopmental disorder: review of proband and parent presentation.Neurogenetics · 2026Review
- Reproductive decision-making for Barth syndrome carriers: Unexplored complexities.Journal of genetic counseling · 2025Article
- Genetics, emotion and care: Navigating future reproductive decisions in families of children with rare genetic conditions.Sociology of health & illness · 2025Article
- Parents' perceptions of personal utility of exome sequencing results.Genetics in medicine : official journal of the American College of Medical Genetics · 2020Article
- Preventing lives affected by hemophilia: A mixed methods study of the views of adults with hemophilia and their families toward genetic screening.Molecular genetics & genomic medicine · 2019Article
- "I didn't take it too seriously because I'd just never heard of it": Experiential knowledge and genetic screening for thalassaemia in the UK.Journal of genetic counseling · 2019Article
- Coming to terms with the imperfectly normal child: attitudes of Israeli parents of screen-positive infants regarding subsequent prenatal diagnosis.Journal of community genetics · 2019Article
- Public Perceptions of Ethical, Legal and Social Implications of Pre-implantation Genetic Diagnosis (PGD) in Malaysia.Science and engineering ethics · 2017Article
- The Future of Fragile X Syndrome: CDC Stakeholder Meeting Summary.Pediatrics · 2017Article
- Implications of thePediatrics · 2017Review
- "This lifetime commitment": Public conceptions of disability and noninvasive prenatal genetic screening.American journal of medical genetics. Part A · 2016Article
- Attitudes towards potentially carrying the FMR1 premutation: before vs after testing of non-carrier females with diminished ovarian reserve.Journal of genetic counseling · 2014Article
- Parenting young children with and without Fragile X syndrome.American journal on intellectual and developmental disabilities · 2012Article
- Negotiating desires and options: how mothers who carry the fragile X gene experience reproductive decisions.Social science & medicine (1982) · 2011Article
Corrections and comments
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Authors and funding
2 authors at 1 institution in 1 country.
Funding
Abstract
A woman who carries the gene for fragile X syndrome (FXS) has a 50 per cent chance per pregnancy of passing the gene to her sons and daughters. In this paper we analyse interview data from mothers who are carriers of the FX gene, and who have at least one child with FXS, to examine how their understandings and enactments of reproductive options, obligations, and responsibilities support an expanded notion of genetic responsibility. Accounts of 108 women from across the United States show that the majority of mothers chose not to have another biological child once they learned their carrier status. They discussed genetic responsibility and reproductive agency in terms of an obligation not to risk having another child who carried the gene, although their accounts reflected the tensions that arose from managing oneself as a genetically at-risk actor. Another 22 mothers either purposely became pregnant or continued an unplanned pregnancy after finding out their carrier status. These mothers' accounts reflect an expanded version of genetic responsibility that incorporates ideas and values beyond managing risk in what it means to act responsibly in light of genetic knowledge.
Indexed as
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What OpenQuestion holds
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.