Literature DB >> 31774570

International perspectives on the implementation of reproductive carrier screening.

Martin B Delatycki1,2,3, Fowzan Alkuraya4,5,6, Alison Archibald1,2,3, Carlo Castellani7, Martina Cornel8,9, Wayne W Grody10,11, Lidewij Henneman8,9, Adonis S Ioannides12, Edwin Kirk13,14,15, Nigel Laing16,17, Anneke Lucassen18, John Massie2,3,19, Juliette Schuurmans18,20, Meow-Keong Thong21, Irene van Langen20, Joël Zlotogora22.   

Abstract

Reproductive carrier screening started in some countries in the 1970s for hemoglobinopathies and Tay-Sachs disease. Cystic fibrosis carrier screening became possible in the late 1980s and with technical advances, screening of an ever increasing number of genes has become possible. The goal of carrier screening is to inform people about their risk of having children with autosomal recessive and X-linked recessive disorders, to allow for informed decision making about reproductive options. The consequence may be a decrease in the birth prevalence of these conditions, which has occurred in several countries for some conditions. Different programs target different groups (high school, premarital, couples before conception, couples attending fertility clinics, and pregnant women) as does the governance structure (public health initiative and user pays). Ancestry-based offers of screening are being replaced by expanded carrier screening panels with multiple genes that is independent of ancestry. This review describes screening in Australia, Cyprus, Israel, Italy, Malaysia, the Netherlands, Saudi Arabia, the United Kingdom, and the United States. It provides an insight into the enormous variability in how reproductive carrier screening is offered across the globe. This largely relates to geographical variation in carrier frequencies of genetic conditions and local health care, financial, cultural, and religious factors.
© 2019 John Wiley & Sons, Ltd.

Entities:  

Year:  2019        PMID: 31774570     DOI: 10.1002/pd.5611

Source DB:  PubMed          Journal:  Prenat Diagn        ISSN: 0197-3851            Impact factor:   3.050


  14 in total

Review 1.  Societal implications of expanded universal carrier screening: a scoping review.

Authors:  Lieke M van den Heuvel; Nina van den Berg; A Cecile J W Janssens; Erwin Birnie; Lidewij Henneman; Wybo J Dondorp; Mirjam Plantinga; Irene M van Langen
Journal:  Eur J Hum Genet       Date:  2022-09-12       Impact factor: 5.351

2.  Dynamics of reproductive genetic technologies: Perspectives of professional stakeholders.

Authors:  Ivy van Dijke; Carla G van El; Phillis Lakeman; Mariëtte Goddijn; Tessel Rigter; Martina C Cornel; Lidewij Henneman
Journal:  PLoS One       Date:  2022-06-21       Impact factor: 3.752

3.  Health practitioners' perceptions of the barriers and enablers to the implementation of reproductive genetic carrier screening: A systematic review.

Authors:  Stephanie Best; Janet Long; Tahlia Theodorou; Sarah Hatem; Rebecca Lake; Alison Archibald; Lucinda Freeman; Jeffrey Braithwaite
Journal:  Prenat Diagn       Date:  2021-03-05       Impact factor: 3.050

4.  Preconception expanded carrier screening: a focus group study with relatives of mucopolysaccharidosis type III patients and the general population.

Authors:  Thirsa Conijn; Ivy van Dijke; Lotte Haverman; Phillis Lakeman; Frits A Wijburg; Lidewij Henneman
Journal:  J Community Genet       Date:  2021-03-22

Review 5.  The Role of Extended CFTR Gene Sequencing in Newborn Screening for Cystic Fibrosis.

Authors:  Anne Bergougnoux; Maureen Lopez; Emmanuelle Girodon
Journal:  Int J Neonatal Screen       Date:  2020-03-21

Review 6.  Advances in Newborn Screening and Presymptomatic Diagnosis of Spinal Muscular Atrophy.

Authors:  Maria Jędrzejowska
Journal:  Degener Neurol Neuromuscul Dis       Date:  2020-12-15

7.  Gene selection for the Australian Reproductive Genetic Carrier Screening Project ("Mackenzie's Mission").

Authors:  Nigel G Laing; Martin B Delatycki; Edwin P Kirk; Royston Ong; Kirsten Boggs; Tristan Hardy; Sarah Righetti; Ben Kamien; Tony Roscioli; David J Amor; Madhura Bakshi; Clara W T Chung; Alison Colley; Robyn V Jamieson; Jan Liebelt; Alan Ma; Nicholas Pachter; Sulekha Rajagopalan; Anja Ravine; Meredith Wilson; Jade Caruana; Rachael Casella; Mark Davis; Samantha Edwards; Alison Archibald; Julie McGaughran; Ainsley J Newson
Journal:  Eur J Hum Genet       Date:  2020-07-16       Impact factor: 4.246

Review 8.  Molecular Diagnosis and Genetic Counseling of Cystic Fibrosis and Related Disorders: New Challenges.

Authors:  Thierry Bienvenu; Maureen Lopez; Emmanuelle Girodon
Journal:  Genes (Basel)       Date:  2020-06-04       Impact factor: 4.096

9.  Awareness of Premarital Screening and Genetic Counseling among Saudis and its Association with Sociodemographic Factors: a National Study.

Authors:  Walid A Al-Shroby; Suha M Sulimani; Sultana A Alhurishi; Maram E Bin Dayel; Nora A Alsanie; Najla J Alhraiwil
Journal:  J Multidiscip Healthc       Date:  2021-02-17

10.  The Core Outcome DEvelopment for Carrier Screening (CODECS) study: protocol for development of a core outcome set.

Authors:  Ebony Richardson; Alison McEwen; Toby Newton-John; Karine Manera; Chris Jacobs
Journal:  Trials       Date:  2021-07-22       Impact factor: 2.279

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