Evidence map›Paper›PMID 34846685›Full record

ArticleJournal of community genetics2022

Evaluating the model of offering expanded genetic carrier screening to high school students within the Sydney Jewish community.

Kristine Barlow-Stewart, Kayley Bardsley, Elle Elan, Jane Fleming, Yemima Berman, Ron Fleischer, Krista Recsei, Daniel Goldberg, John Tucker, Leslie Burnett

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of community genetics, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors.

Kristine Barlow-StewartNorthern Clinical School, Faculty of Medicine and Health, University of Sydney, St Leonards, NSW, 2065, Australia.ORCID https://orcid.org/0000-0003-1831-9944
Kayley BardsleyNorthern Clinical School, Faculty of Medicine and Health, University of Sydney, St Leonards, NSW, 2065, Australia.ORCID https://orcid.org/0000-0003-1305-4932
Elle ElanNorthern Clinical School, Faculty of Medicine and Health, University of Sydney, St Leonards, NSW, 2065, Australia.ORCID https://orcid.org/0000-0001-9685-7057
Jane FlemingNorthern Clinical School, Faculty of Medicine and Health, University of Sydney, St Leonards, NSW, 2065, Australia.ORCID https://orcid.org/0000-0003-1164-2386
Yemima BermanNorthern Clinical School, Faculty of Medicine and Health, University of Sydney, St Leonards, NSW, 2065, Australia.ORCID https://orcid.org/0000-0003-2495-4928
Ron FleischerCommunity Genetics Program (NSW), Wolper Jewish Hospital, Woollahra, NSW, 2025, Australia.ORCID https://orcid.org/0000-0002-7292-4590
Krista RecseiPangolin Consulting, The Entrance, NSW, 2261, Australia.ORCID https://orcid.org/0000-0001-9494-7905
Daniel GoldbergCommunity Genetics Program (NSW), Wolper Jewish Hospital, Woollahra, NSW, 2025, Australia.
John TuckerCommunity Genetics Program (NSW), Wolper Jewish Hospital, Woollahra, NSW, 2025, Australia.
Leslie BurnettNorthern Clinical School, Faculty of Medicine and Health, University of Sydney, St Leonards, NSW, 2065, Australia. leslie.burnett@garvan.org.au.ORCID http://orcid.org/0000-0001-7282-9596

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Programs offering reproductive genetic carrier screening (RGCS) to high school students within the Ashkenazi Jewish community in several countries including Canada and Australia have demonstrated high uptake and retention of educational messages over time. This study was undertaken to evaluate whether testing for an expanded number of conditions in a high school setting would impact the effectiveness of education. In this questionnaire-based study, genetic carrier testing for nine conditions was offered to 322 year 11 students from five high schools, with students attending a compulsory 1-h education session prior to voluntary testing. Comparison of pre- and post-education measures demonstrated a significant increase in knowledge, positive attitudes, and reduced concern immediately after the education session. Retention of knowledge, measures of positive attitude, and low concern over a 12-month period were significantly higher than baseline, although there was some reduction over time. In total, 77% of students exhibited informed choice regarding their intention to test. A significant increase in baseline knowledge scores and positive attitude was also demonstrated between our original 1995 evaluation (with testing for only one condition) and 2014 (testing for nine conditions) suggesting community awareness and attitudes to RGCS have increased. These findings validate the implementation of effective education programs as a key component of RGCS and are relevant as gene panels expand with the introduction of genomic technologies.

Indexed as

Ashkenazi Jewish community genetics screeningExpanded genetic carrier testingGenetics educationHigh school screening programPre-conception reproductive carrier testing

Identifiers

PMID34846685
PMCPMC8799788

What OpenQuestion holds

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LicenceCC BY
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Registered trials

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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.