ArticleSocial science & medicine (1982)2011
Negotiating desires and options: how mothers who carry the fragile X gene experience reproductive decisions.
Article in Social science & medicine (1982), 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 1 of them a synthesis that pooled it.
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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.
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Who cites it
21 citing papers in PubMed, 1 synthesis or guideline pooled it, 43 citations in OpenAlex.
- Does theFMR1 gene affect IVF success?Reproductive biomedicine online · 2019Pooled it
- Reproductive decision-making for Barth syndrome carriers: Unexplored complexities.Journal of genetic counseling · 2025Article
- Aboriginal families living with MJD in remote Australia: questions of access and equity.International journal for equity in health · 2024Article
- 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
- Experiences of Women Who Have Had Carrier Testing for Duchenne Muscular Dystrophy and Becker Muscular Dystrophy During Adolescence.Journal of genetic counseling · 2018Article
- Preimplantation genetic diagnosis versus prenatal diagnosis-decision-making among pregnant FMR1 premutation carriers.Journal of assisted reproduction and genetics · 2018Article
- The role of experiential knowledge within attitudes towards genetic carrier screening: A comparison of people with and without experience of spinal muscular atrophy.Health expectations : an international journal of public participation in health care and health policy · 2018Article
- Query the merits of embryo editing for reproductive research now.Nature biotechnology · 2017Article
- Experience as knowledge: Disability, distillation and (reprogenetic) decision-making.Social science & medicine (1982) · 2017Article
- The Future of Fragile X Syndrome: CDC Stakeholder Meeting Summary.Pediatrics · 2017Article
- Implications of thePediatrics · 2017Review
- The nuanced negative: Meanings of a negative diagnostic result in clinical exome sequencing.Sociology of health & illness · 2016Article
- Spanish- and English-Speaking Pregnant Women's Views on cfDNA and Other Prenatal Screening: Practical and Ethical Reflections.Journal of genetic counseling · 2016Article
- Reproductive and gynecologic care of women with fragile X primary ovarian insufficiency (FXPOI).Menopause (New York, N.Y.) · 2016Article
- After the Biomedical Technology Revolution: Where to Now for a Bio-Psycho-Social Approach to Social Work?British journal of social work · 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
- Genetics' influence on patient experiences with a rare chronic disorder: a photovoice study of living with alpha-1 antitrypsin deficiency.The Nursing clinics of North America · 2013Article
- Reproductive Decision Making and Genetic Predisposition to Sudden Cardiac Death.AJOB primary research · 2012Article
- Caregiver opinions about fragile X population screening.Genetics in medicine : official journal of the American College of Medical Genetics · 2012Article
- Enacting genetic responsibility: experiences of mothers who carry the fragile X gene.Sociology of health & illness · 2011Article
Corrections and comments
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Authors and funding
2 authors at 1 institution in 1 country.
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Abstract
This paper contributes an empirically-based analysis of how women negotiate reproductive desires and constructions of risk in light of genetic information for a single-gene disorder with known inheritance patterns. Fragile X syndrome (FXS) is the most common cause of inherited intellectual disability and female carriers have a 50% probability with each pregnancy of transmitting the FX gene. We present data from interviews conducted with 108 mothers across the U.S. who participated in a longitudinal, mixed methods study on family adaptations to FXS and who have at least one child with FXS. Women's accounts of their reproductive desires, actions, and reasoning indicate that the known 50% risk of transmitting the FX gene was a powerful deterrent to attempting to have more children through unmediated pregnancy. The majority (77%) decided not to have any more biological children after carrier diagnosis. This decision often required revising previous plans for how many children they would have, how and when they would have them, and what kind of mothers they would be. However, genetic risk was not a primary consideration in the reproductive calculations of 22 women who chose to continue planned and unplanned unmediated pregnancies. Though women's reproductive negotiations are constrained by medical discourse and practices, they are also unpredictable and emerge out of lived experiences and sometimes ambivalent ways of reckoning. While increased availability and accuracy of genetic information and testing contribute to certain forms of family planning that prioritize genetic risk management, we also find that some families call upon alternative understandings and desires for making a family to articulate genetic risk and negotiate their reproductive futures.
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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.