ArticleAmerican journal of human genetics1994
Offering cystic fibrosis carrier screening to an HMO population: factors associated with utilization.
Article in American journal of human genetics, 1994. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 41 papers, 6 of them syntheses 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
41 citing papers in PubMed, 6 syntheses or guidelines pooled it, 146 citations in OpenAlex.
- Preconception risk assessment for thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease.The Cochrane database of systematic reviews · 2021Pooled it
- Preconception risk assessment for thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease.The Cochrane database of systematic reviews · 2018Pooled it
- Preconception risk assessment for thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease.The Cochrane database of systematic reviews · 2015Pooled it
- Preconception care: promoting reproductive planning.Reproductive health · 2014Pooled it
- Men in the women's world of hereditary breast and ovarian cancer--a systematic review.Familial cancer · 2009Pooled it
- Cystic fibrosis prenatal screening in genetic counseling practice: recommendations of the National Society of Genetic Counselors.Journal of genetic counseling · 2005Guideline
- Attitudes and opinions of pregnant women who are not offered cystic fibrosis carrier screening.European journal of human genetics : EJHG · 2014Trial
- Cystic fibrosis carrier population screening in the primary care setting.American journal of human genetics · 1996Trial
- How women respond to uncertainty in the context of genetic screening: A qualitative analysis framed by the uncertainty tolerance model.Journal of genetic counseling · 2025Article
- Women's preferences for genetic screening in routine care: A qualitative study.Patient education and counseling · 2025Article
- Association of Self-reported Primary Care Physician Tolerance for Uncertainty With Variations in Resource Use and Patient Experience.JAMA network open · 2022Article
- Factors Associated with Physician Tolerance of Uncertainty: an Observational Study.Journal of general internal medicine · 2022Observational
- Genetic Sample Provision Among National Alzheimer's Coordinating Center Participants.Journal of Alzheimer's disease : JAD · 2019Article
- Informed decision making and psychosocial outcomes in pregnant and nonpregnant women offered population fragile X carrier screening.Genetics in medicine : official journal of the American College of Medical Genetics · 2017Article
- Article
- "It gives them more options": preferences for preconception genetic carrier screening for fragile X syndrome in primary healthcare.Journal of community genetics · 2016Article
- Disclosure of genetic research results to members of a founder population.Journal of genetic counseling · 2014Article
- Parents' perspectives on participating in genetic research in autism.Journal of autism and developmental disorders · 2013Article
- Would you want to know? Public attitudes on early diagnostic testing for Alzheimer's disease.Alzheimer's research & therapy · 2013Article
- Carrier screening in preconception consultation in primary care.Journal of community genetics · 2012Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 1 institution in 1 country.
Funding
Abstract
We offered cystic fibrosis (CF) carrier testing to reproductive-age enrollees in an HMO, in order to determine factors associated with test utilization in a primarily nonpregnant population. Male and female enrollees either were mailed an invitation to have the test after attending an educational session (N = 2,713) or were approached in waiting rooms at the HMO sites and given the opportunity to have the test without making an additional visit (N = 608). Uptake was considerably higher when testing could be obtained without making an additional visit (23.5%) than when attendance at an educational session was required as a prerequisite for having the test (3.7%). Utilization was higher among respondents who were planning children. Caucasians, and those with higher educational attainment. Among respondents planning to have children, individuals with higher tolerance for test uncertainty, lower fear of stigma, and higher perceived risk of being a carrier were significantly more likely to have the test. Testing decisions were not associated with the perceived burden of a child with CF or with the likelihood of aborting for CF. Although utilization of CF carrier testing is relatively low among nonpregnant individuals, uptake is significantly higher when testing can be obtained with minimal effort. Factors associated with the decision to be tested had more to do with implications of being a carrier per se than with the concerns of having a child with CF.
Indexed as
Identifiers
7942840PMC1918300W1570287271What 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.