ArticleThe British journal of general practice : the journal of the Royal College of General Practitioners2008
Parents' experiences of universal screening for haemoglobin disorders: implications for practice in a new genetics era.
Article in The British journal of general practice : the journal of the Royal College of General Practitioners, 2008. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers, 6 of them syntheses that pooled it.
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Who cites it
29 citing papers in PubMed, 6 syntheses or guidelines pooled it.
- Benefits and harms of antenatal and newborn screening programmes in health economic assessments: the VALENTIA systematic review and qualitative investigation.Health technology assessment (Winchester, England) · 2024Pooled it
- Preconception risk assessment for thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease.The Cochrane database of systematic reviews · 2021Pooled it
- Absorbing it all: A meta-ethnography of parents' unfolding experiences of newborn screening.Social science & medicine (1982) · 2021Pooled it
- Preconception risk assessment for thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease.The Cochrane database of systematic reviews · 2018Pooled it
- The Role of Information Provision in Economic Evaluations of Newborn Bloodspot Screening: A Systematic Review.Applied health economics and health policy · 2015Pooled it
- Preconception risk assessment for thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease.The Cochrane database of systematic reviews · 2015Pooled it
- Impact on informed choice of offering antenatal sickle cell and thalassaemia screening in primary care: a randomized trial.Journal of medical screening · 2011Trial
- EHA Guidelines on the management of children and adults with hemoglobin SC disease.HemaSphere · 2026Article
- EHA Recommendations for preconceptual and antenatal screening and prenatal diagnosis for hemoglobinopathies.HemaSphere · 2026Article
- Sickle cell disease and maternity care: A qualitative synthesis of women's and health providers experiences.PloS one · 2026Article
- Understanding the psychological impact of identifying carrier status on young adults: A qualitative study exploring peer reactions.Journal of genetic counseling · 2025Article
- Psychosocial Issues Related to Newborn Screening: A Systematic Review and Synthesis.International journal of neonatal screening · 2022Review
- "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
- Experiences of a High-Risk Population with Prenatal Hemoglobinopathy Carrier Screening in a Primary Care Setting: a Qualitative Study.Journal of genetic counseling · 2018Article
- Preferences for prenatal diagnosis of sickle-cell disorder: A discrete choice experiment comparing potential service users and health-care providers.Health expectations : an international journal of public participation in health care and health policy · 2017Article
- Healthcare professionals' and parents' experiences of the confirmatory testing period: a qualitative study of the UK expanded newborn screening pilot.BMC pediatrics · 2017Article
- Venous thromboembolism in adults screened for sickle cell trait: a population-based cohort study with nested case-control analysis.BMJ open · 2017Observational
- Parents' responses to receiving sickle cell or cystic fibrosis carrier results for their child following newborn screening.European journal of human genetics : EJHG · 2015Article
- Informing children of their newborn screening carrier result for sickle cell or cystic fibrosis: qualitative study of parents' intentions, views and support needs.Journal of genetic counseling · 2014Article
- Consanguineous marriage and reproductive risk: attitudes and understanding of ethnic groups practising consanguinity in Western society.European journal of human genetics : EJHG · 2014Article
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No grant is acknowledged in the PubMed record.
Abstract
backgroundEngland is the only country in the world that currently has universal population screening for haemoglobin disorders through linked antenatal and newborn screening. Little is known about the acceptability of such screening.
aimTo explore parents' experiences of, and attitudes towards, new universal genetic screening for haemoglobin disorders. DESIGN OF STUDY: Narrative interview study.
settingPrimary and community care settings across England.
methodNarrative interviews were undertaken with a maximum variation sample of 39 people who had experienced gene-carrier identification through antenatal and newborn screening for sickle cell, thalassaemia, and other haemoglobin variants within the previous 2 years.
resultsMost parents were unaware screening had occurred or had given it little consideration and so were surprised or shocked by results. However, they were glad to learn of their carrier status, reproductive genetic risk, or their newborn's carrier status. Participants emphasised that antenatal screening should happen as early as possible. Many would rather have known their carrier status before pregnancy or before entering a relationship. Although most were satisfied with the information they received, significant misunderstandings remained. There were culturally diverse attitudes towards prenatal diagnosis and termination. These procedures were acceptable to some parents with strong religious beliefs, including Christians and Muslims.
conclusionParents support screening for haemoglobin disorders but need to be better informed and better prepared for results and what they mean. Sensitivity to patient diversity in attitudes and choices is also required. Universal screening for genetic reproductive risk will increasingly involve generalists, particularly in primary care, presenting opportunities for screening before or earlier in pregnancy, which is likely to be welcomed by patients.
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