ArticleAmerican journal of human genetics1996
Lack of interest by nonpregnant couples in population-based cystic fibrosis carrier screening.
Article in American journal of human genetics, 1996. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers, 5 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
25 citing papers in PubMed, 5 syntheses or guidelines pooled it, 87 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
- Cystic fibrosis prenatal screening in genetic counseling practice: recommendations of the National Society of Genetic Counselors.Journal of genetic counseling · 2005Guideline
- Research biobank participants attitudes towards genetic exceptionalism and health record confidentiality.Journal of community genetics · 2024Article
- Parental Knowledge on Thalassaemia and Factors Associated with Refusal to Screen Their Children.The Malaysian journal of medical sciences : MJMS · 2020Article
- Direct-to-consumer carrier screening for cystic fibrosis via a hospital website: a 6-year evaluation.Journal of community genetics · 2019Article
- Responsible implementation of expanded carrier screening.European journal of human genetics : EJHG · 2016Article
- "It gives them more options": preferences for preconception genetic carrier screening for fragile X syndrome in primary healthcare.Journal of community genetics · 2016Article
- State-offered ethnically targeted reproductive genetic testing.Genetics in medicine : official journal of the American College of Medical Genetics · 2016Article
- Knowledge, attitudes, and barriers to carrier screening for the Ashkenazi Jewish panel: a Florida experience : Education and Barriers assessment for Jewish Genetic Diseases.Journal of community genetics · 2014Article
- 'No thanks'-reasons why pregnant women declined an offer of cystic fibrosis carrier screening.Journal of community genetics · 2014Article
- The changing landscape of carrier screening: expanding technology and options?.Health matrix (Cleveland, Ohio : 1991) · 2013Article
- Carrier screening in preconception consultation in primary care.Journal of community genetics · 2012Article
- Perceived relevance of genetic carrier screening: observations of the role of health-related life experiences and stage of life in decision making.Journal of community genetics · 2012Article
- Preconceptional ancestry-based carrier couple screening for cystic fibrosis and haemoglobinopathies: what determines the intention to participate or not and actual participation?European journal of human genetics : EJHG · 2009Article
- Religious and spiritual issues in medical genetics.American journal of medical genetics. Part C, Seminars in medical genetics · 2009Article
- God and genes in the caring professions: clinician and clergy perceptions of religion and genetics.American journal of medical genetics. Part C, Seminars in medical genetics · 2009Article
- What do patients prefer: informed consent models for genetic carrier testing.Journal of genetic counseling · 2007Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 1 institution in 1 country.
Funding
Abstract
We used signs and letters to offer free cystic fibrosis (CF) carrier screening to nonpregnant adults in stable relationships who visited numerous clinical and nonclinical sites in Nashville. A total of 179 individuals (<<1% of those eligible) elected to be tested. To understand this observation, we used questionnaires to assess individuals' attitudes about genetic testing in general and about CF carrier screening in particular (n=873). Participants expressed conflicting views about carrier screening. More than 90% of people thought that genetic testing should at least be available. Most respondents said that the views of their partners and physicians were important in their decision making, and most believed that these others favored genetic testing. Yet, more than two-thirds indicated that such factors as insurability, being "at risk," what they would need to learn, abortion, and religious beliefs were important in their decision making, opinions that mitigated against genetic testing. In particular, one-third feared that carriers would lose their health insurance, one-quarter said that they would have been more interested had they been able to provide DNA by buccal swab rather than by finger stick, and less than one-sixth believed that genetic testing was meddling in God's plan. In the face of both the low level of use of free CF carrier screening by nonpregnant couples when it was not offered in person by health-care professionals and the wide variety of concerns demonstrated, we believe that clinicians should not routinely offer carrier screening to nonpregnant individuals who do not have a family history of CF.
Indexed as
Identifiers
8644721PMC1914565W141290857What 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.