ArticleAmerican journal of public health2009
Questioning the consensus: managing carrier status results generated by newborn screening.
Article in American journal of public health, 2009. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 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
20 citing papers in PubMed, 1 synthesis or guideline pooled it, 37 citations in OpenAlex.
- 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
- Improving Severe Combined Immunodeficiency and Cystic Fibrosis Newborn Screening by Replacing Current Tests with First-Tier Targeted Gene Sequencing.International journal of neonatal screening · 2026Article
- Data-Related and Methodological Challenges in Assessing the Cost-Effectiveness of Traditional and Genomic Newborn Screening Programs.Applied health economics and health policy · 2026Review
- Understanding the psychological impact of identifying carrier status on young adults: A qualitative study exploring peer reactions.Journal of genetic counseling · 2025Article
- Health services use by children identified as heterozygous hemoglobinopathy mutation carriers via newborn screening.BMC pediatrics · 2021Article
- An Evaluation of Three Ways of Communicating Carrier Status Results to the Parents of Children in a Neonatal Sickle Cell Screening Programme.Frontiers in pediatrics · 2020Article
- Including ELSI research questions in newborn screening pilot studies.Genetics in medicine : official journal of the American College of Medical Genetics · 2019Article
- Fostering caring relationships: Suggestions to rethink liberal perspectives on the ethics of newborn screening.Bioethics · 2018Review
- A secondary benefit: the reproductive impact of carrier results from newborn screening for cystic fibrosis.Genetics in medicine : official journal of the American College of Medical Genetics · 2017Article
- Genomic newborn screening: public health policy considerations and recommendations.BMC medical genomics · 2017Article
- Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents.American journal of human genetics · 2015Review
- Public views on participating in newborn screening using genome sequencing.European journal of human genetics : EJHG · 2014Article
- 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
- Consulting communities on feedback of genetic findings in international health research: sharing sickle cell disease and carrier information in coastal Kenya.BMC medical ethics · 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
- Genetic screening.Epidemiologic reviews · 2011Review
- The expansion of newborn screening: is reproductive benefit an appropriate pursuit?Nature reviews. Genetics · 2009Article
- Clinical and ethical considerations in managing carrier detection.American journal of public health · 2009Article
- Carrier detection and clinical uncertainty: the case for public health ethics.American journal of public health · 2009Article
- 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
3 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
An apparent consensus governs the management of carrier status information generated incidentally through newborn screening: results cannot be withheld from parents. This normative stance encodes the focus on autonomy and distaste for paternalism that characterize the principles of clinical bioethics. However, newborn screening is a classic public health intervention in which paternalism may trump autonomy and through which parents are-in effect-required to receive carrier information. In truth, the disposition of carrier results generates competing moral infringements: to withhold information or require its possession. Resolving this dilemma demands consideration of a distinctive body of public health ethics to highlight the moral imperatives associated with the exercise of collective authority in the pursuit of public health benefits.
Indexed as
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What 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.