ArticleEuropean journal of human genetics : EJHG2009
Preconceptional ancestry-based carrier couple screening for cystic fibrosis and haemoglobinopathies: what determines the intention to participate or not and actual participation?
Article in European journal of human genetics : EJHG, 2009. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers.
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Who cites it
26 citing papers in PubMed.
- Attitudes of autistic adults toward genetic testing for autism.Journal of genetic counseling · 2025Article
- Primary care professionals' views on population-based expanded carrier screening: an online focus group study.Family practice · 2024Article
- Investigation of interest in and timing preference for cancer predisposition testing and expanded carrier screening among women of reproductive age.PEC innovation · 2023Article
- Preconception expanded carrier screening: Impact of information presented by text or video on genetic knowledge and attitudes.Journal of genetic counseling · 2021Article
- The ethics of preconception expanded carrier screening in patients seeking assisted reproduction.Human reproduction open · 2021Article
- GP-provided couple-based expanded preconception carrier screening in the Dutch general population: who accepts the test-offer and why?European journal of human genetics : EJHG · 2020Article
- Direct-to-consumer carrier screening for cystic fibrosis via a hospital website: a 6-year evaluation.Journal of community genetics · 2019Article
- Deciding on cystic fibrosis carrier screening: three citizens' juries and an online survey.European journal of public health · 2018Article
- Experiences of a High-Risk Population with Prenatal Hemoglobinopathy Carrier Screening in a Primary Care Setting: a Qualitative Study.Journal of genetic counseling · 2018Article
- Preconception carrier screening for multiple disorders: evaluation of a screening offer in a Dutch founder population.European journal of human genetics : EJHG · 2018Article
- Expanded carrier screening: what determines intended participation and can this be influenced by message framing and narrative information?European journal of human genetics : EJHG · 2017Article
- The measurement of patient attitudes regarding prenatal and preconception genetic carrier screening and translational behavioral medicine: an integrative review.Translational behavioral medicine · 2017Review
- Factors for successful implementation of population-based expanded carrier screening: learning from existing initiatives.European journal of public health · 2017Article
- Stakeholder perspectives on the implementation of genetic carrier screening in a changing landscape.BMC health services research · 2017Article
- Responsible implementation of expanded carrier screening.European journal of human genetics : EJHG · 2016Article
- Advantages of expanded universal carrier screening: what is at stake?European journal of human genetics : EJHG · 2016Article
- Disclosure of genetic research results to members of a founder population.Journal of genetic counseling · 2014Article
- Attitudes of health care professionals toward carrier screening for cystic fibrosis. A review of the literature.Journal of community genetics · 2014Article
- Determinants of the intention of preconception care use: lessons from a multi-ethnic urban population in the Netherlands.International journal of public health · 2013Article
- On averages and peaks: how do people integrate attitudes about multiple diseases to reach a decision about multiplex genetic testing?Medical decision making : an international journal of the Society for Medical Decision Making · 2013Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
This paper explores determinants of the intention to participate or not and of actual participation in preconceptional ancestry-based carrier couple screening for cystic fibrosis (CF) and haemoglobinopathies (HbPs). In total, 9453 individuals from a multi-ethnic population were invited. Invitees who had a partner and who were planning a pregnancy were the target population (33-36%). Test participation was conditional on survey participation. Those who refrained from test participation were asked to participate in the survey only. The questionnaire was based on the Theory of Planned Behaviour, which explains behaviour through intention. It was completed by 418 survey participants: 171 who intended to participate in the testing, and 247 who refrained from test participation. Both test intenders and offer decliners generally had a positive attitude towards test participation, and perceived high behavioural control. This applied to Western and non-Western survey participants equally. Offer decliners, however, perceived less control in terms of the time and effort needed for participation. Still, 68% of them intended to participate in the future if the screening would be offered routinely. Test intenders more often would draw reproductive consequences from test results, perceived a higher risk of being a carrier, more benefits and less adverse psychological outcomes. Feelings of stigmatisation were not an important issue, but 14% thought that there would be discrimination against carriers: among them more were non-Western survey participants. Preconceptional ancestry-based CF and HbPs carrier screening was evaluated as positive and desirable among Western and non-Western survey participants. The effort and time needed for participation were important reasons for declining participation, which might be overcome by improving access to the screening.
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