A genetic screening programme for Tay-Sachs disease and cystic fibrosis for Australian Jewish high school students

Barlow‐Stewart, Kristine

doi:10.1136/jmg.40.4.e45

Cited by 60 publications

(95 citation statements)

References 20 publications

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“…Reports from other screening programmes suggest that the cost of screening is a significant factor in the decision whether to have screening, yet this did not appear to be a major factor in our study (Durfy et al 1994;Barlow-Stewart et al 2003). Although the majority of participants felt that a reasonable price to pay for the test would be between AUD$50-100, the cost of the test was not stated as an influencing factor in the decision to have screening by two thirds of participants.…”

Section: Discussioncontrasting

confidence: 55%

‘No thanks’—reasons why pregnant women declined an offer of cystic fibrosis carrier screening

et al. 2013

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Section: Discussioncontrasting

confidence: 55%

‘No thanks’—reasons why pregnant women declined an offer of cystic fibrosis carrier screening

et al. 2013

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“…Multi-item scales examining emotional wellbeing, 33,34 concern, 35 and emotional impact 36 similarly did not observe significant differences in emotional states between carriers and noncarriers.…”

Section: Carrier Testingmentioning

confidence: 87%

“…36 Finally, retrospective reports indicated that most children were generally content with their overall experience of having undergone carrier testing. High proportions of tested children answered affirmatively when a single item question was used to ask whether they were satisfied with testing (90 -100%), 30,31,34 completely satisfied with testing (76%), 39 either satisfied or very satisfied (91%), 35 would be tested again (85-100%), 34,39 and would recommend testing to a friend (76 -89%). 31,34,39 However, these measures could be subject to social desirability bias or, given the retrospective designs, optimistic recall bias.…”

Section: Carrier Testingmentioning

confidence: 99%

“…Four studies 30,31,35,38 conducted in high-schools found that most students (65-100%), particularly carriers, would want to know the carrier status of a future partner. In some cases (17%), noncarrier students said they would use carrier status as a criterion for partner selection, even when there was a vanishingly small chance of having an affected child.…”

Section: Carrier Testingmentioning

confidence: 99%

“…36 Tested children also did not express difficulty communicating with their family about their results. 30,35,36,38 For example, the study by McConkie-Rosell et al 36 on fragile X syndrome testing among girls assessed their relationships with parents, siblings, and extended family (e.g., "How has knowing your carrier status affected your relationship with your siblings?"). No significant differences were found between carriers (n ϭ 20), noncarriers (n ϭ 18), and untested at-risk girls (n ϭ 15).…”

Section: Carrier Testingmentioning

confidence: 99%

See 2 more Smart Citations

Effects of genetic risk information on children's psychosocial wellbeing: A systematic review of the literature

Wade

Wilfond

McBride

2010

Genetics in Medicine

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Purpose: As advances in research have made a growing number of genetic tests available, clinicians will increasingly be faced with making decisions about when offering genetic testing services to children is appropriate. A key factor in such decisions involves determining whether knowledge of genetic health risks might have an impact on children's psychosocial wellbeing. Methods: We conducted a systematic review of the literature using five online databases to identify studies that assessed the impact of communicating nondiagnostic carrier or presymptomatic genetic test results to children. Results: A total of 17 articles met the inclusion criteria for this review. These studies used a wide range of methodologies to explore carrier and predictive testing. Although there was little quantitative evidence that receiving genetic test results led to a significant impact on children's psychosocial wellbeing, it was found that methodological inconsistencies, small samples, and reliance on assessments most appropriate for psychopathology make any firm conclusions about the impact of genetic testing on children premature. Conclusion: Currently, there is insufficient evidence to inform a nuanced understanding of how children respond to genetic testing. This suggests a strong need for further research that uses rigorous approaches to address children's emotional states, self-perception, and social wellbeing. Genet Med 2010:12(6):317-326.

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Genetic screening for reproductive purposes at school: Is it a good strategy?

Frumkin¹,

Zlotogora

2007

American J of Med Genetics Pt A

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Thalassemia and Tay-Sachs disease were the first diseases in which the criteria for heterozygote genetic screening were met and successful programs for reproductive purposes were initiated in populations at risk. However, many of the couples first discover the possibility of genetic screening during pregnancy and efforts are made to bring couples to consider screening tests before the first pregnancy. In this context, high school offers a convenient setting and several pilot programs have been very successful. All evaluations of these programs found that education plays a critical role in allowing informed decisions and minimizing the possible harms. While it has been suggested that high school may be the best setting for reproductive screening programs, guidelines of several societies of human genetics recommend the use of carrier screening only in individuals older than 18 years. There are several other problems related to genetic screening programs at school and some are discussed in the review. Our opinion is that school should be a place to provide the tools for decisions by education only; while the option to have the genetic tests later in life or in another setting should be offered to the students as part of the education session. This may allow the students to decide when and where to have a genetic test.

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A genetic screening programme for Tay-Sachs disease and cystic fibrosis for Australian Jewish high school students

Cited by 60 publications

References 20 publications

‘No thanks’—reasons why pregnant women declined an offer of cystic fibrosis carrier screening

‘No thanks’—reasons why pregnant women declined an offer of cystic fibrosis carrier screening

Effects of genetic risk information on children's psychosocial wellbeing: A systematic review of the literature

Genetic screening for reproductive purposes at school: Is it a good strategy?

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