Evaluation of cystic fibrosis carrier screening programs according to genetic screening criteria

Henneman, Lidewij; Poppelaars, F.; Kate, Leo P. ten

doi:10.1097/00125817-200207000-00002

Cited by 31 publications

(31 citation statements)

References 48 publications

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“…Nevertheless, we conclude that an offer of combined preconceptional ancestry-based CF and HbPs carrier couple screening does not cause major negative psychological harm, which is one of the prerequisites of offering genetic screening according to the genetic screening criteria. 46 With regard to knowledge and understanding of the testresults, the results of the present study showed no major difference from those of previous studies either. Knowledge improved significantly from before to just after the pretest consultation.…”

Section: Discussioncontrasting

confidence: 59%

Three-month follow-up of Western and non-Western participants in a study on preconceptional ancestry-based carrier couple screening for cystic fibrosis and hemoglobinopathies in the Netherlands

Lakeman

Plass

Henneman

et al. 2008

Genetics in Medicine

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Objective: To study psychological outcomes, knowledge, recall and understanding of test-results, satisfaction, and reproductive intentions among 97 Western and 46 non-Western participants in a unique preconceptional carrier screening study for both cystic fibrosis and hemoglobinopathies in a multiethnic population the Netherlands, in which a couple's eligibility for cystic fibrosis and/or hemoglobinopathies testing was based on both partners' ancestry. Methods: Questionnaires before and after pretest consultation, and 1 week and 3 months after receiving test-results. Three cystic fibrosis and seven hemoglobinopathy carriers were identified, but no carrier couples.Results: Overall, anxiety levels were low, knowledge improved after pretest consultation but decreased after 3 months. Ninety-four percent remembered their test-results. Western compared with non-Western participants had higher knowledge-scores and better understanding of test-results. None of the carriers felt less healthy, six felt relieved, and one felt disappointed. Four carriers were unaware of the residual risk of having an affected child.Participants intended to draw reproductive decisions from test-results, were satisfied, did not regret participation, and did not report major feelings of discrimination or stigmatization. Conclusions: Similar to previous studies, no major adverse psychological effects were demonstrated among the Western and non-Western participants in this study, and they would draw reproductive decisions on test-results. No arguments for rejecting a combined offer of preconceptional ancestry-based cystic fibrosis and hemoglobinopathies carrier screening were found. An extensive implementation study should be carried out, in which understanding of test-results needs further attention, to investigate whether or not this type of screening should be implemented on a large scale in the Netherlands. Genet

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Section: Discussioncontrasting

confidence: 59%

Three-month follow-up of Western and non-Western participants in a study on preconceptional ancestry-based carrier couple screening for cystic fibrosis and hemoglobinopathies in the Netherlands

Lakeman

Plass

Henneman

et al. 2008

Genetics in Medicine

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“…Studies of other carrier screening programs, such as for CF, have suggested that teaching new and abstract concepts in genetics is difficult, particularly when existing public knowledge is limited. 18,19 Contrary to these studies, the school community knowledge in the Melbourne TSD carrier screening program was high, even before education, probably because of a continuously increasing awareness in this population. Although knowledge is an important outcome of an educational intervention, it is clear from the study described here that psychosocial and behavioral outcomes are equally, if not more, relevant in the decision-making process because they showed significant associations with student decisions.…”

Section: Discussionmentioning

confidence: 77%

Tay Sachs disease carrier screening in schools: Educational alternatives and cheekbrush sampling

Gason

Metcalfe

Delatycki

et al. 2005

Genetics in Medicine

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computer-based resource versus an oral educational presentation and (2) blood sampling for enzyme and genetic testing versus cheekbrush testing for genetic sampling alone. Results: The education session was effective in significantly increasing students' knowledge (10.5% Ϯ 1.2%, P Ͻ .0001) and decreasing their anxiety about being a carrier (Ϫ12.2% Ϯ 1.6%, P Ͻ .0001). For the students, no significant differences were found between the computer-based resource and oral presentation. There were significantly more students accepting a carrier test and anxiety was lower when a cheekbrush test was offered compared with when a blood test was offered. Conclusions:Computer-based instruction is equally effective, in addition to offering advantages of self-paced learning and minimization of human resources as an oral presentation within a genetic carrier screening program.Cheekbrush sampling is preferred to blood sampling and should be implemented into current practices for offering genetic screening programs. These results present alternatives to practices for genetic screening reflecting the current developing technology. Genet Med 2005:7(9):626-632.

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“…The majority of studies reported little evidence of long-term psychological harm, with the provision of counseling. This is supported by Henneman et al, 98 who reported that the potential psychological harms associated with population-based CF carrier screening are insufficient to warrant the refusal to offer carrier screening to the general population in the Netherlands.…”

Section: Discussionmentioning

confidence: 85%

Population-based carrier screening for cystic fibrosis: a systematic review of 23 years of research

Ioannou

McClaren

Massie

et al. 2014

Genetics in Medicine

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Evaluation of cystic fibrosis carrier screening programs according to genetic screening criteria

Cited by 31 publications

References 48 publications

Three-month follow-up of Western and non-Western participants in a study on preconceptional ancestry-based carrier couple screening for cystic fibrosis and hemoglobinopathies in the Netherlands

Three-month follow-up of Western and non-Western participants in a study on preconceptional ancestry-based carrier couple screening for cystic fibrosis and hemoglobinopathies in the Netherlands

Tay Sachs disease carrier screening in schools: Educational alternatives and cheekbrush sampling

Population-based carrier screening for cystic fibrosis: a systematic review of 23 years of research

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