non-invasive prenatal diagnosis;
cell-free fetal DNA;
single gene disorders;
ethics;
D O I:
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摘要:
Non-invasive prenatal testing for single gene disorders is now clearly on the horizon. This new technology offers obvious clinical benefits such as safe testing early in pregnancy. Before widespread implementation, it is important to consider the possible ethical implications. Four hypothetical scenarios are presented that highlight how ethical ideals of respect for autonomy, privacy and fairness may come into play when offering non-invasive prenatal testing for single gene disorders. The first scenario illustrates the moral case for using these tests for ‘information only’, identifying a potential conflict between larger numbers of women seeking the benefits of the test and the wider social impact of funding tests that do not offer immediate clinical benefit. The second scenario shows how the simplicity and safety of non-invasive prenatal testing could lead to more autonomous decision-making and, conversely, how this could also lead to increased pressure on women to take up testing. In the third scenario we show how, unless strong safeguards are put in place, offering non-invasive prenatal testing could be subject to routinisation with informed consent undermined and that woman who are newly diagnosed as carriers may be particularly vulnerable. The final scenario introduces the possibility of a conflict of the moral rights of a woman and her partner through testing for single gene disorders. This analysis informs our understanding of the potential impacts of non-invasive prenatal testing for single gene disorders on clinical practice and has implications for future policy and guidelines for prenatal care.
机构:
Great Ormond St Hosp Children NHS Fdn Trust, NE Thames Reg Genet Serv, London WC1N 3BH, EnglandGreat Ormond St Hosp Children NHS Fdn Trust, NE Thames Reg Genet Serv, London WC1N 3BH, England
Twiss, Philip
Hill, Melissa
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Great Ormond St Hosp Children NHS Fdn Trust, NE Thames Reg Genet Serv, London WC1N 3BH, EnglandGreat Ormond St Hosp Children NHS Fdn Trust, NE Thames Reg Genet Serv, London WC1N 3BH, England
Hill, Melissa
Daley, Rebecca
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Great Ormond St Hosp Children NHS Fdn Trust, NE Thames Reg Genet Serv, London WC1N 3BH, EnglandGreat Ormond St Hosp Children NHS Fdn Trust, NE Thames Reg Genet Serv, London WC1N 3BH, England
Daley, Rebecca
Chitty, Lyn S.
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Great Ormond St Hosp Children NHS Fdn Trust, NE Thames Reg Genet Serv, London WC1N 3BH, England
UCL Inst Child Hlth, London WC1N 1EH, EnglandGreat Ormond St Hosp Children NHS Fdn Trust, NE Thames Reg Genet Serv, London WC1N 3BH, England
机构:
Univ Coll London Hosp, Fetal Med Unit, London, EnglandLeeds Gen Infirm, Fetal Med Unit, Leeds, W Yorkshire, England
Hewitt, Hilary
McCarthy, Laura
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机构:Leeds Gen Infirm, Fetal Med Unit, Leeds, W Yorkshire, England
McCarthy, Laura
Wimalasundera, Ruwan
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Univ Coll London Hosp, Fetal Med Unit, London, England
Sunnybank Med Ctr, Bradford, W Yorkshire, EnglandLeeds Gen Infirm, Fetal Med Unit, Leeds, W Yorkshire, England
Wimalasundera, Ruwan
Pandya, Pranav
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机构:
Univ Coll London Hosp, Fetal Med Unit, London, EnglandLeeds Gen Infirm, Fetal Med Unit, Leeds, W Yorkshire, England
机构:
Beilinson Med Ctr, Recanati Genet Inst, Rabin Med Ctr, Petah Tiqwa, Israel
Tel Aviv Univ, Sackler Sch Med, Tel Aviv, IsraelTechnion Israel Inst Technol, Genet Inst, Ruth & Bruce Rappaport Fac Med, Carmel Med Ctr, 7 Michal St, Haifa, Israel
Maya, Idit
Sukenik-Halevy, Rivka
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Tel Aviv Univ, Sackler Sch Med, Tel Aviv, Israel
Meir Med Ctr, Genet Inst, Kefar Sava, IsraelTechnion Israel Inst Technol, Genet Inst, Ruth & Bruce Rappaport Fac Med, Carmel Med Ctr, 7 Michal St, Haifa, Israel
Sukenik-Halevy, Rivka
Basel-Salmon, Lina
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Beilinson Med Ctr, Recanati Genet Inst, Rabin Med Ctr, Petah Tiqwa, Israel
Tel Aviv Univ, Sackler Sch Med, Tel Aviv, Israel
Felsenstein Med Res Ctr, Petah Tiqwa, IsraelTechnion Israel Inst Technol, Genet Inst, Ruth & Bruce Rappaport Fac Med, Carmel Med Ctr, 7 Michal St, Haifa, Israel
Basel-Salmon, Lina
Sagi-Dain, Lena
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Technion Israel Inst Technol, Genet Inst, Ruth & Bruce Rappaport Fac Med, Carmel Med Ctr, 7 Michal St, Haifa, IsraelTechnion Israel Inst Technol, Genet Inst, Ruth & Bruce Rappaport Fac Med, Carmel Med Ctr, 7 Michal St, Haifa, Israel
机构:
Ctr Hosp Reg Univ, Hop Cochin, AP HP, Federat Genet & Med Genom,Serv Med Genom Malad Sy, 27 Rue Faubourg St Jacques, F-75014 Paris, France
Ctr Hosp Reg Univ, Lab Genet Mol & Histocompatibilite, Brest, FranceCtr Hosp Reg Univ, Hop Cochin, AP HP, Federat Genet & Med Genom,Serv Med Genom Malad Sy, 27 Rue Faubourg St Jacques, F-75014 Paris, France
Pacault, Mathilde
Verebi, Camille
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Ctr Hosp Reg Univ, Hop Cochin, AP HP, Federat Genet & Med Genom,Serv Med Genom Malad Sy, 27 Rue Faubourg St Jacques, F-75014 Paris, FranceCtr Hosp Reg Univ, Hop Cochin, AP HP, Federat Genet & Med Genom,Serv Med Genom Malad Sy, 27 Rue Faubourg St Jacques, F-75014 Paris, France
Verebi, Camille
Lopez, Maureen
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Ctr Hosp Reg Univ, Hop Cochin, AP HP, Federat Genet & Med Genom,Serv Med Genom Malad Sy, 27 Rue Faubourg St Jacques, F-75014 Paris, FranceCtr Hosp Reg Univ, Hop Cochin, AP HP, Federat Genet & Med Genom,Serv Med Genom Malad Sy, 27 Rue Faubourg St Jacques, F-75014 Paris, France
Lopez, Maureen
Vaucouleur, Nicolas
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Ctr Hosp Reg Univ, Hop Cochin, AP HP, Federat Genet & Med Genom,Serv Med Genom Malad Sy, 27 Rue Faubourg St Jacques, F-75014 Paris, FranceCtr Hosp Reg Univ, Hop Cochin, AP HP, Federat Genet & Med Genom,Serv Med Genom Malad Sy, 27 Rue Faubourg St Jacques, F-75014 Paris, France
Vaucouleur, Nicolas
Orhant, Lucie
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Ctr Hosp Reg Univ, Hop Cochin, AP HP, Federat Genet & Med Genom,Serv Med Genom Malad Sy, 27 Rue Faubourg St Jacques, F-75014 Paris, FranceCtr Hosp Reg Univ, Hop Cochin, AP HP, Federat Genet & Med Genom,Serv Med Genom Malad Sy, 27 Rue Faubourg St Jacques, F-75014 Paris, France
Orhant, Lucie
Deburgrave, Nathalie
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Ctr Hosp Reg Univ, Hop Cochin, AP HP, Federat Genet & Med Genom,Serv Med Genom Malad Sy, 27 Rue Faubourg St Jacques, F-75014 Paris, FranceCtr Hosp Reg Univ, Hop Cochin, AP HP, Federat Genet & Med Genom,Serv Med Genom Malad Sy, 27 Rue Faubourg St Jacques, F-75014 Paris, France
Deburgrave, Nathalie
Leturcq, France
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Ctr Hosp Reg Univ, Hop Cochin, AP HP, Federat Genet & Med Genom,Serv Med Genom Malad Sy, 27 Rue Faubourg St Jacques, F-75014 Paris, FranceCtr Hosp Reg Univ, Hop Cochin, AP HP, Federat Genet & Med Genom,Serv Med Genom Malad Sy, 27 Rue Faubourg St Jacques, F-75014 Paris, France
Leturcq, France
Vidaud, Dominique
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Ctr Hosp Reg Univ, Hop Cochin, AP HP, Federat Genet & Med Genom,Serv Med Genom Malad Sy, 27 Rue Faubourg St Jacques, F-75014 Paris, FranceCtr Hosp Reg Univ, Hop Cochin, AP HP, Federat Genet & Med Genom,Serv Med Genom Malad Sy, 27 Rue Faubourg St Jacques, F-75014 Paris, France
Vidaud, Dominique
Girodon, Emmanuelle
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Ctr Hosp Reg Univ, Hop Cochin, AP HP, Federat Genet & Med Genom,Serv Med Genom Malad Sy, 27 Rue Faubourg St Jacques, F-75014 Paris, FranceCtr Hosp Reg Univ, Hop Cochin, AP HP, Federat Genet & Med Genom,Serv Med Genom Malad Sy, 27 Rue Faubourg St Jacques, F-75014 Paris, France
Girodon, Emmanuelle
Bienvenu, Thierry
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Ctr Hosp Reg Univ, Hop Cochin, AP HP, Federat Genet & Med Genom,Serv Med Genom Malad Sy, 27 Rue Faubourg St Jacques, F-75014 Paris, FranceCtr Hosp Reg Univ, Hop Cochin, AP HP, Federat Genet & Med Genom,Serv Med Genom Malad Sy, 27 Rue Faubourg St Jacques, F-75014 Paris, France
Bienvenu, Thierry
Nectoux, Juliette
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Ctr Hosp Reg Univ, Hop Cochin, AP HP, Federat Genet & Med Genom,Serv Med Genom Malad Sy, 27 Rue Faubourg St Jacques, F-75014 Paris, FranceCtr Hosp Reg Univ, Hop Cochin, AP HP, Federat Genet & Med Genom,Serv Med Genom Malad Sy, 27 Rue Faubourg St Jacques, F-75014 Paris, France