ArticleAmerican journal of human genetics1995
Perception of carrier status by cystic fibrosis siblings.
Article in American journal of human genetics, 1995. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers.
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
18 citing papers in PubMed, 77 citations in OpenAlex.
- Causal Attributions in an Australian Aboriginal Family With Marfan Syndrome: A Qualitative Study.Frontiers in genetics · 2020Article
- Ethics in genetic counselling.Journal of community genetics · 2019Review
- Patient actions and reactions after receiving negative results from expanded carrier screening.Clinical genetics · 2018Article
- Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents.American journal of human genetics · 2015Review
- Disclosing Secondary Findings from Pediatric Sequencing to Families: Considering the "Benefit to Families".The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2015Article
- Can we make assumptions about the psychosocial impact of living as a carrier, based on studies assessing the effects of carrier testing?Journal of genetic counseling · 2011Review
- Death anxiety and symbolic immortality in relatives at risk for familial amyloid polyneuropathy type I (FAP I, ATTR V30M).Journal of genetic counseling · 2010Article
- Ethical issues of predictive genetic testing for diabetes.Journal of diabetes science and technology · 2009Review
- Genetic testing in asymptomatic minors: background considerations towards ESHG Recommendations.European journal of human genetics : EJHG · 2009Article
- Testing teens: a commentary.Journal of genetic counseling · 2008Article
- Living with genetic risk: effect on adolescent self-concept.American journal of medical genetics. Part C, Seminars in medical genetics · 2008Article
- Parents' perceptions of functioning in families having a child with a genetic condition.Journal of genetic counseling · 2007Article
- Improving service evaluation in clinical genetics: identifying effects of genetic diseases on individuals and families.Journal of genetic counseling · 2007Article
- Illness representations, self-regulation, and genetic counseling: a theoretical review.Journal of genetic counseling · 2006Review
- How does the mode of inheritance of a genetic condition influence families? A study of guilt, blame, stigma, and understanding of inheritance and reproductive risks in families with X-linked and autosomal recessive diseases.Genetics in medicine : official journal of the American College of Medical Genetics · 2006Article
- Guidelines for genetic testing of healthy children.Paediatrics & child health · 2003Article
- Threat to Parental Role: A Possible Mechanism of Altered Self-Concept Related to Carrier Knowledge.Journal of genetic counseling · 2000Article
- Attitudes toward cystic fibrosis carrier and prenatal testing and utilization of carrier testing among relatives of individuals with cystic fibrosis.Journal of genetic counseling · 1999Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors at 1 institution in 1 country.
Funding
Abstract
Now that the cystic fibrosis (CF) gene has been identified, direct genetic testing for this disorder is available. The current lack of precision has generated a controversy concerning whether population screening is advisable. However, there is general agreement that testing for CF carriers should be offered to CF-affected families. The purpose of this study was to explore levels of understanding and feelings about carrier status and genetics of CF in affected families. Fifty-four adult CF siblings and their 30 spouses drawn from Children's Hospital, Oakland, and Children's Hospital, Boston, were interviewed, and transcripts were coded on various categories. The relationship between birth order and beliefs about carrier status was significant, with last-born siblings more likely to believe they are not carriers. Higher sibling resentment was found to be significantly related to willingness to abort an affected fetus, to more guilt, and to assumption of carrier status. Thirty percent of siblings believe that carrier status implies health difficulties. Increased feelings of guilt were significantly related to the belief that carrier status implies health problems and to the wish to be a carrier. Interestingly, beliefs regarding carrier status and the wish to be a carrier are not influenced by educational or income level. Some siblings have had their child tested for carrier status and others are planning to do so before the child reaches the age of 18 years. Perception of carrier status is strongly influenced by psychological factors.(ABSTRACT TRUNCATED AT 250 WORDS)
Indexed as
Identifiers
7668270PMC1801539W1206821910What 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.