Literature DB >> 23715719

'No thanks'-reasons why pregnant women declined an offer of cystic fibrosis carrier screening.

L Ioannou1, J Massie, S Lewis, B McClaren, V Collins, M B Delatycki.   

Abstract

The objective of this study was to assess attitudes and opinions of women declining the offer of cystic fibrosis (CF) carrier screening through a population-based programme in Victoria, Australia. Between December 2009 and May 2011, women declining an offer of CF carrier screening were invited to participate in a questionnaire-based study. Recruitment was at two private obstetric ultrasound clinics and two private obstetric practices in Melbourne. Of the participants (n = 54), the majority were well educated (76%), aged 30-34 years (54%), with a household income of >AUD$100,000 (76%). Compared to those who accepted screening (reported in a previous study) (Ioannou et al., Public Health Genomics 13:449-56, 2010), knowledge levels were significantly lower in participants declining screening (t = 3.32, p < 0.01). The main reasons for declining screening were having no family history of CF (58%) and not considering a termination of pregnancy for CF (53%). Providers and consumers should be informed that most children born with autosomal-recessive conditions such as CF have no family history of the condition.

Entities:  

Year:  2013        PMID: 23715719      PMCID: PMC3955462          DOI: 10.1007/s12687-013-0151-3

Source DB:  PubMed          Journal:  J Community Genet        ISSN: 1868-310X


  25 in total

1.  Attitudes of high school students toward carrier screening and prenatal diagnosis of cystic fibrosis.

Authors:  Sharon J Durfy; Andrea Page; Barry Eng; Patricia L Chang; John S Waye
Journal:  J Genet Couns       Date:  1994-06       Impact factor: 2.537

2.  Cystic fibrosis carrier population screening in the primary care setting.

Authors:  S Loader; P Caldwell; A Kozyra; J C Levenkron; C D Boehm; H H Kazazian; P T Rowley
Journal:  Am J Hum Genet       Date:  1996-07       Impact factor: 11.025

3.  Cystic fibrosis: community knowledge and attitudes towards carrier screening and prenatal diagnosis.

Authors:  M Decruyenaere; G Evers-Kiebooms; L Denayer; H Van den Berghe
Journal:  Clin Genet       Date:  1992-04       Impact factor: 4.438

4.  A survey of newborn screening for cystic fibrosis in Europe.

Authors:  Kevin W Southern; Anne Munck; Rodney Pollitt; Georges Travert; Luisa Zanolla; Jeannette Dankert-Roelse; Carlo Castellani
Journal:  J Cyst Fibros       Date:  2006-07-25       Impact factor: 5.482

5.  Current practice and attitudes of Australian obstetricians toward population-based carrier screening for inherited conditions.

Authors:  Zornitza Stark; John Massie; Belinda McClaren; Liane Ioannou; Nicole Cousens; Sharon Lewis; Sylvia Metcalfe; Martin B Delatycki
Journal:  Twin Res Hum Genet       Date:  2013-01-21       Impact factor: 1.587

6.  PCR-based screening for cystic fibrosis carrier mutations in an ethnically diverse pregnant population.

Authors:  W W Grody; C Dunkel-Schetter; Z H Tatsugawa; M A Fox; C Y Fang; R M Cantor; J M Novak; H N Bass; B F Crandall
Journal:  Am J Hum Genet       Date:  1997-04       Impact factor: 11.025

7.  Public lacks knowledge about genetic testing and gene therapy.

Authors:  R Hill; M Stanisstreet; E Boyes; H O'Sullivan
Journal:  BMJ       Date:  1995-11-18

8.  Carrier screening for cystic fibrosis: test acceptance and one year follow-up.

Authors:  J C Levenkron; S Loader; P T Rowley
Journal:  Am J Med Genet       Date:  1997-12-31

9.  Population-based carrier screening for cystic fibrosis in Victoria: the first three years experience.

Authors:  John Massie; Vicki Petrou; Robyn Forbes; Lisette Curnow; Liane Ioannou; Desiree Dusart; Agnes Bankier; Martin Delatycki
Journal:  Aust N Z J Obstet Gynaecol       Date:  2009-10       Impact factor: 2.100

10.  Validation of a decision regret scale.

Authors:  Jamie C Brehaut; Annette M O'Connor; Timothy J Wood; Thomas F Hack; Laura Siminoff; Elisa Gordon; Deb Feldman-Stewart
Journal:  Med Decis Making       Date:  2003 Jul-Aug       Impact factor: 2.583

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  6 in total

Review 1.  A review of consanguinity in Ireland--estimation of frequency and approaches to mitigate risks.

Authors:  P Barrett
Journal:  Ir J Med Sci       Date:  2016-02       Impact factor: 1.568

2.  "Suddenly Having two Positive People who are Carriers is a Whole New Thing" - Experiences of Couples Both Identified as Carriers of Cystic Fibrosis Through a Population-Based Carrier Screening Program in Australia.

Authors:  Liane Ioannou; Martin B Delatycki; John Massie; Jan Hodgson; Sharon Lewis
Journal:  J Genet Couns       Date:  2015-05-01       Impact factor: 2.537

Review 3.  Pregnancy and cystic fibrosis: Approach to contemporary management.

Authors:  James Geake; George Tay; Leonie Callaway; Scott C Bell
Journal:  Obstet Med       Date:  2014-11-07

4.  Informed decision making and psychosocial outcomes in pregnant and nonpregnant women offered population fragile X carrier screening.

Authors:  Sylvia A Metcalfe; Melissa Martyn; Alice Ames; Vicki Anderson; Alison D Archibald; Grad Dip Gen Couns; Rob Carter; Jonathan Cohen; Megan Cotter; M GenCouns; William Dang; Martin B Delatycki; Susan Donath; Samantha Edwards; PGrad Dip Educ; Grad Dip Gen Couns; Robin Forbes; Grad Dip Gen Couns; Mioara Gavrila; M MedSci; Jane Halliday; Chriselle Hickerton; Melissa Hill; Grad Dip Gen Couns; Lorilli Jacobs; PGrad Dip Ultrasound; Vicki Petrou; Grad Dip Gen Couns; Loren Plunkett; M GenCouns; Leslie Sheffield; F Racp; Alison Thornton; Grad Dip Gen Couns; Sandra Younie; PGrad Dip Hlth Econ; Jon D Emery
Journal:  Genet Med       Date:  2017-06-29       Impact factor: 8.822

5.  Reproductive genetic carrier screening for cystic fibrosis, fragile X syndrome, and spinal muscular atrophy in Australia: outcomes of 12,000 tests.

Authors:  Alison Dalton Archibald; Melanie Jane Smith; Trent Burgess; Katrina Louise Scarff; Justine Elliott; Clare Elizabeth Hunt; Zoe McDonald; Caitlin Barns-Jenkins; Chelsea Holt; Karina Sandoval; Vanessa Siva Kumar; Lisa Ward; Emily Caroline Allen; Sarah Valerie Collis; Shannon Cowie; David Francis; Martin B Delatycki; Eppie Mildred Yiu; R John Massie; Mark Domenic Pertile; Desirée du Sart; Damien Bruno; David J Amor
Journal:  Genet Med       Date:  2017-10-26       Impact factor: 8.822

6.  "I didn't take it too seriously because I'd just never heard of it": Experiential knowledge and genetic screening for thalassaemia in the UK.

Authors:  Felicity K Boardman; Rachel Hale
Journal:  J Genet Couns       Date:  2018-12-24       Impact factor: 2.537

  6 in total

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