ArticleJournal of genetic counseling2012
What is a "balanced" description? Insight from parents of individuals with down syndrome.
Article in Journal of genetic counseling, 2012. 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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
15 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Communicating neurological prognosis in the prenatal period: a narrative review and practice guidelines.Pediatric research · 2025Guideline
- Personal values, professional responsibilities and non-invasive prenatal testing: reflections of genetic counsellors in Australia.Journal of community genetics · 2026Article
- Lack of provision of social and emotional information about Down syndrome associated with negative prenatal diagnosis experiences.Journal of community genetics · 2025Article
- Article
- Down Syndrome: how to communicate the diagnosis.Italian journal of pediatrics · 2023Review
- Understanding the phenotypic spectrum and family experiences of XYY syndrome: Important considerations for genetic counseling.Journal of community genetics · 2023Review
- Using ethnodrama to support parents in sense-making after prenatal or neonatal diagnosis of a child's disabling condition.Journal of applied research in intellectual disabilities : JARID · 2022Article
- Variation in morpho-lexical development within and between diagnoses in children with neurodevelopmental disorders.Frontiers in psychology · 2022Article
- Family Sense-Making After a Down Syndrome Diagnosis.Qualitative health research · 2020Article
- Ethics in genetic counselling.Journal of community genetics · 2019Review
- Disability Experiences and Perspectives Regarding Reproductive Decisions, Parenting, and the Utility of Genetic Services: a Qualitative Study.Journal of genetic counseling · 2018Article
- "Yeah that Made a Big Difference!": The Importance of the Relationship between Health Professionals and Fathers Who Have a Child with Down Syndrome.Journal of genetic counseling · 2018Article
- Non-invasive prenatal testing for fetal chromosome abnormalities: review of clinical and ethical issues.The application of clinical genetics · 2016Review
- A 'cure' for Down syndrome: what do parents want?Clinical genetics · 2014Article
- Community-engagement strategies of the developmental disabilities practice-based research network (DD-PBRN).Journal of the American Board of Family Medicine : JABFMArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
Abstract
Genetic counselors and parents of individuals with Down syndrome (DS) agree that descriptions of DS in prenatal settings should be "balanced." However, there is no consensus regarding what constitutes a balanced description of DS. A survey was designed in collaboration with, and sent to the membership of, the British Columbia based Lower Mainland Down Syndrome Society (N = 260). Respondents were asked how they would describe DS to a couple who have just received a prenatal diagnosis of the condition. We rated the descriptions provided for positivity/negativity. Completed surveys were returned by 101 members, the majority of whom were Caucasian (87%) and female (79%). Participants' descriptions of DS ranged from entirely positive (n = 5; 10%) to entirely negative (n = 4; 7%) in nature. Deriving a description of DS that would broadly be perceived as "balanced" may be impossible. Instead, it may be more important to explore the range of possibilities regarding the family experience of raising a child with DS using nonjudgmental terminology, and to help families evaluate these possibilities in the context of their own values, coping strategies, and support networks.
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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.