ArticleEuropean journal of human genetics : EJHG2010
Understanding sickle cell carrier status identified through newborn screening: a qualitative study.
Article in European journal of human genetics : EJHG, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 2 of them syntheses that pooled it.
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Who cites it
20 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Preferences, attitudes and views regarding genetic newborn screening (gNBS) for rare diseases: a systematic review of the literature and synthesis from 2009 to 2022.Orphanet journal of rare diseases · 2026Pooled it
- Reconsidering reproductive benefit through newborn screening: a systematic review of guidelines on preconception, prenatal and newborn screening.European journal of human genetics : EJHG · 2010Pooled it
- Psychosocial Issues Related to Newborn Screening: A Systematic Review and Synthesis.International journal of neonatal screening · 2022Review
- Article
- Health services use by children identified as heterozygous hemoglobinopathy mutation carriers via newborn screening.BMC pediatrics · 2021Article
- Sickle cell carriers' unmet information needs: Beyond knowing trait status.Journal of genetic counseling · 2019Article
- A qualitative study to explore how professionals in the United Kingdom make decisions to test children for a sickle cell carrier status.European journal of human genetics : EJHG · 2016Article
- Parents' responses to receiving sickle cell or cystic fibrosis carrier results for their child following newborn screening.European journal of human genetics : EJHG · 2015Article
- Understanding and improving health education among first-time parents of infants with sickle cell anemia in Alabama: a mixed methods approach.Journal of pediatric hematology/oncology · 2015Article
- Stakeholder attitudes towards the role and application of informed consent for newborn bloodspot screening: a study protocol.BMJ open · 2014Article
- Obstetrician-gynecologists' knowledge of sickle cell disease screening and management.BMC pregnancy and childbirth · 2014Article
- Primary care role in expanded newborn screening: After the heel prick test.Canadian family physician Medecin de famille canadien · 2013Article
- Factors that influence parents' experiences with results disclosure after newborn screening identifies genetic carrier status for cystic fibrosis or sickle cell hemoglobinopathy.Patient education and counseling · 2013Article
- The attitudes and intention to participate in hemoglobinopathy carrier screening in The Netherlands among individuals from Turkish, Moroccan, and Surinamese descent.Journal of environmental and public health · 2013Article
- Health-care providers' views on pursuing reproductive benefit through newborn screening: the case of sickle cell disorders.European journal of human genetics : EJHG · 2012Article
- Reply to Ross' commentary: Reproductive benefit through newborn screening: preferences, policy and ethics.European journal of human genetics : EJHG · 2012Article
- Epinephrine modulates BCAM/Lu and ICAM-4 expression on the sickle cell trait red blood cell membrane.Biophysical journal · 2012Article
- A qualitative secondary evaluation of statewide follow-up interviews for abnormal newborn screening results for cystic fibrosis and sickle cell hemoglobinopathy.Genetics in medicine : official journal of the American College of Medical Genetics · 2012Article
- Reproductive decisions in people with sickle cell disease or sickle cell trait.Western journal of nursing research · 2010Article
- Effort required to contact primary care providers after newborn screening identifies sickle cell trait.Journal of the National Medical AssociationArticle
Corrections and comments
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Authors and funding
9 authors.
Funding
Abstract
The expansion of newborn screening (NBS) is increasing the generation of incidental results, notably carrier results. Although carrier status is generally understood to be clinically benign, concerns persist that parents may misunderstand its meaning, with deleterious effects on children and their families. Expansion of the NBS panel in Ontario, Canada in 2006 to include sickle cell disorders drew attention to the policy challenge of incidental carrier results. We conducted a study of consumer and provider attitudes to inform policy on disclosure. In this paper, we report the results of (i) qualitative interviews with health-care providers, advocates and parents of carrier infants and (ii) focus groups with new parents and individuals active with the sickle cell community. Lay and provider participants generally believed that carrier results were clinically insignificant. However, some uncertainty persisted among lay consumers in the form of conjecture or doubt. In addition, consumers and advocates who were most informed about the disease articulated insistent yet dissonant claims of clinical significance. Meanwhile, providers referenced research knowledge to offer an equivocal assessment of the possibility and significance of clinically symptomatic carrier status. We conclude that many interpretations of carrier status are in circulation, failing to fit neatly into the categories of 'clinically significant' or 'benign.' This creates challenges for communicating clearly with parents - challenges exacerbated by inconsistent messages from screening programs regarding the significance of sickle cell carrier status. Disclosure policy related to incidentally generated infant carrier results needs to account for these complex realities.
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