ArticleJournal of genetic counseling2005
Negotiating responsibility: case studies of reproductive decision-making and prenatal genetic testing in families facing Huntington disease.
Article in Journal of genetic counseling, 2005. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers, 1 of them a synthesis that pooled it.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
25 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The attitudes of individuals with or at risk of adult-onset genetic conditions on reproductive genetic testing: A systematic review.Journal of genetic counseling · 2025Pooled it
- Emotional distress, guilt and impact on reproductive decision-making in women with BRCA1/2 mutations.Breast (Edinburgh, Scotland) · 2026Article
- The experience of "at-risk" status for familial frontotemporal dementia (fFTD) and its impact on reproductive decision-making: A qualitative study.Journal of genetic counseling · 2025Article
- Renegotiation, uncertainty, imagination: Assemblage perspectives on reproductive and family planning with an Inborn Error of immunity.Social science & medicine (1982) · 2024Article
- Danish heritable retinoblastoma survivors' perspectives on reproductive choices: "It's important for me, not to pass on this condition".Journal of genetic counseling · 2023Article
- Reproductive options for families at risk of Osteogenesis Imperfecta: a review.Orphanet journal of rare diseases · 2020Review
- A case-note review of continued pregnancies found to be at a high risk of Huntington's disease: considerations for clinical practice.European journal of human genetics : EJHG · 2019Review
- Ethics in genetic counselling.Journal of community genetics · 2019Review
- Reproductive decision making: interviews with mothers of children with undiagnosed developmental delay.Journal of community 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
- "It was an Emotional Baby": Previvors' Family Planning Decision-Making Styles about Hereditary Breast and Ovarian Cancer Risk.Journal of genetic counseling · 2017Article
- Experience as knowledge: Disability, distillation and (reprogenetic) decision-making.Social science & medicine (1982) · 2017Article
- Expert Knowledge Influences Decision-Making for Couples Receiving Positive Prenatal Chromosomal Microarray Testing Results.Culture, medicine and psychiatry · 2017Article
- Are Wrongful Life Actions Threatening the Value of Human Life?Journal of bioethical inquiry · 2017Article
- Family Communication and Cascade Testing for Fragile X Syndrome.Journal of genetic counseling · 2016Article
- An exploration of the experience of Huntington's disease in family dyads: an interpretative phenomenological analysis.Journal of genetic counseling · 2014Article
- Reproductive Decision Making and Genetic Predisposition to Sudden Cardiac Death.AJOB primary research · 2012Article
- Enacting genetic responsibility: experiences of mothers who carry the fragile X gene.Sociology of health & illness · 2011Article
- Negotiating desires and options: how mothers who carry the fragile X gene experience reproductive decisions.Social science & medicine (1982) · 2011Article
- What were you thinking?: individuals at risk for Huntington Disease talk about having children.Journal of genetic counseling · 2010Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author.
Funding
Abstract
Three case studies are presented to further our understanding of how responsibility is negotiated in families when making decisions about genetic risk. These draw on a model of responsibility generated in a study of reproductive decision-making in families facing Huntington disease (HD) to illustrate the impact of prenatal testing on this process. This involves analyzing: how people present themselves as acting responsibly whether or not they utilize genetic testing; who they feel responsible to in their family and elsewhere; the impact that testing has on these relationships; and, how negotiating responsibility changes over time with repeated use of prenatal testing, changing risk status and maturational changes. Two key findings are: how decision-making is perceived can become as important as what is decided; and, how responsibility is negotiated depends on which of these relationships are prioritized. Implications of the findings for clinical practice are noted and suggestions made for further applications of the model.
Indexed as
Identifiers
15959653What 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.