Ethical considerations in choosing a model for population-based cystic fibrosis carrier screening

被引:13
|
作者
Modra, Lucy J. [1 ]
Massie, R. John [2 ]
Delatycki, Martin B. [1 ,3 ]
机构
[1] Austin Hlth, Clin Genet Unit, Melbourne, Vic, Australia
[2] Royal Childrens Hosp, Melbourne, Vic, Australia
[3] Murdoch Childrens Res Inst, Bruce Lefroy Ctr Genet Hlth Res, Melbourne, Vic, Australia
基金
英国医学研究理事会;
关键词
TAY-SACHS-DISEASE; DOWNS-SYNDROME; HIGH-SCHOOLS; HEREDITARY HEMOCHROMATOSIS; INFORMED-CONSENT; PRIMARY-CARE; WOMEN; ATTITUDES; ACCEPTABILITY; INFORMATION;
D O I
10.5694/j.1326-5377.2010.tb03836.x
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
Cystic fibrosis (CF) carrier testing can be used to inform reproductive decision making, allowing carriers to avoid having a child with CF. A government-funded, population-based CF carrier screening program would allow greater equity of access to this test. The setting in which CF carrier screening is offered significantly affects the extent to which participants make well informed, voluntary decisions to accept or decline testing. Screening offered before pregnancy and in non-clinical environments better promotes participant autonomy than screening offered in the prenatal consultation. MJA 2010; 193: 157-160
引用
收藏
页码:157 / 160
页数:4
相关论文
共 50 条
  • [1] Population-based carrier screening for cystic fibrosis
    Doksum, T
    Bernhardt, BA
    [J]. CLINICAL OBSTETRICS AND GYNECOLOGY, 1996, 39 (04): : 763 - 771
  • [2] Population-based genetic carrier screening for cystic fibrosis in Victoria
    Archibald, Alison D.
    Massie, John
    Smith, Melanie J.
    Dalton, Deborah G.
    du Sart, Desiree
    Amor, David J.
    [J]. MEDICAL JOURNAL OF AUSTRALIA, 2014, 200 (04) : 205 - 206
  • [3] Lack of interest by nonpregnant couples in population-based cystic fibrosis carrier screening
    Clayton, EW
    Hannig, VL
    Pfotenhauer, JP
    Parker, RA
    Campbell, PW
    Phillips, JA
    [J]. AMERICAN JOURNAL OF HUMAN GENETICS, 1996, 58 (03) : 617 - 627
  • [4] Population-based carrier screening for cystic fibrosis in Victoria: The first three years experience
    Massie, John
    Petrou, Vicki
    Forbes, Robyn
    Curnow, Lisette
    Ioannou, Liane
    Dusart, Desiree
    Bankier, Agnes
    Delatycki, Martin
    [J]. AUSTRALIAN & NEW ZEALAND JOURNAL OF OBSTETRICS & GYNAECOLOGY, 2009, 49 (05): : 484 - 489
  • [5] Respiratory physicians and clinic coordinators' attitudes to population-based cystic fibrosis carrier screening
    Cunningham, Fiona
    Lewis, Sharon
    Curnow, Lisette
    Glazner, Judith
    Massie, John
    [J]. JOURNAL OF CYSTIC FIBROSIS, 2014, 13 (01) : 99 - 105
  • [6] Population-based carrier screening for cystic fibrosis: a systematic review of 23 years of research
    Ioannou, Liane
    McClaren, Belinda J.
    Massie, John
    Lewis, Sharon
    Metcalfe, Sylvia A.
    Forrest, Laura
    Delatycki, Martin B.
    [J]. GENETICS IN MEDICINE, 2014, 16 (03) : 207 - 216
  • [7] Human Genetics Society of Australasia Position Statement: Population-Based Carrier Screening for Cystic Fibrosis
    Delatycki, Martin B.
    Burke, Jo
    Christie, Louise
    Collins, Felicity
    Gabbett, Michael
    George, Peter
    Haan, Eric
    Ioannou, Liane
    Martin, Nicole
    McKenzie, Fiona
    O'Leary, Peter
    Scoble-Williams, Nicole
    Turner, Gillian
    Massie, John
    [J]. TWIN RESEARCH AND HUMAN GENETICS, 2014, 17 (06) : 578 - 583
  • [8] Cystic fibrosis carrier population screening: A review
    Rowley, PT
    Loader, S
    Levenkron, JC
    [J]. GENETIC TESTING, 1997, 1 (01): : 53 - 59
  • [9] Population-Based Genetic Screening for Cystic Fibrosis: Attitudes and Outcomes
    Ioannou, L.
    Massie, J.
    Collins, V.
    McClaren, B.
    Delatycki, M. B.
    [J]. PUBLIC HEALTH GENOMICS, 2010, 13 (7-8) : 449 - 456
  • [10] THE IMPACT OF POPULATION-BASED SCREENING FOR CARRIERS OF CYSTIC-FIBROSIS
    BEKKER, H
    DENNISS, G
    MODELL, M
    BOBROW, M
    MARTEAU, T
    [J]. JOURNAL OF MEDICAL GENETICS, 1994, 31 (05) : 364 - 368