The aims of expanded universal carrier screening: Autonomy, prevention, and responsible parenthood

Expanded universal carrier screening (EUCS) entails a population-wide screening offer for multiple disease-causing mutations simultaneously. Although there is much debate about the conditions under which EUCS can responsibly be introduced, there seems to be little discussion about its aim: providing...

Descripción completa

Guardado en:  
Detalles Bibliográficos
Autores principales: Hout, Sanne van der (Autor) ; Dondorp, Wybo (Autor) ; Wert, Guido de (Autor)
Tipo de documento: Electrónico Artículo
Lenguaje:Inglés
Verificar disponibilidad: HBZ Gateway
Interlibrary Loan:Interlibrary Loan for the Fachinformationsdienste (Specialized Information Services in Germany)
Publicado: [2019]
En: Bioethics
Año: 2019, Volumen: 33, Número: 5, Páginas: 568-576
Clasificaciones IxTheo:NCB Ética individual
NCH Ética de la medicina
Otras palabras clave:B procreative non-maleficence
B reproductive autonomy
B expanded carrier screening
B responsible parenthood
B procreative beneficence
B preconception carrier screening
Acceso en línea: Presumably Free Access
Volltext (Publisher)
Volltext (doi)

MARC

LEADER 00000caa a22000002c 4500
001 1727506863
003 DE-627
005 20230426130552.0
007 cr uuu---uuuuu
008 200820s2019 xx |||||o 00| ||eng c
024 7 |a 10.1111/bioe.12555  |2 doi 
035 |a (DE-627)1727506863 
035 |a (DE-599)KXP1727506863 
040 |a DE-627  |b ger  |c DE-627  |e rda 
041 |a eng 
084 |a 1  |2 ssgn 
100 1 |a Hout, Sanne van der  |e VerfasserIn  |4 aut 
245 1 4 |a The aims of expanded universal carrier screening  |b Autonomy, prevention, and responsible parenthood 
264 1 |c [2019] 
336 |a Text  |b txt  |2 rdacontent 
337 |a Computermedien  |b c  |2 rdamedia 
338 |a Online-Ressource  |b cr  |2 rdacarrier 
520 |a Expanded universal carrier screening (EUCS) entails a population-wide screening offer for multiple disease-causing mutations simultaneously. Although there is much debate about the conditions under which EUCS can responsibly be introduced, there seems to be little discussion about its aim: providing carrier couples with options for autonomous reproductive choice. While this links in with current accounts of the aim of foetal anomaly screening, it is different from how the aim of ancestry-based carrier screening has traditionally been understood: reducing the disease burden in the population. The reasons why the aim of EUCS is presented in terms of ‘autonomy’ rather than ‘prevention’ have not been spelled out in the literature. This paper seeks to fill this gap by considering the morally relevant similarities and dissimilarities between foetal anomaly screening, ancestry-based carrier screening and EUCS. When carrier screening is performed in the prenatal period, enhancing autonomy appears the most appropriate aim of EUCS, as the alternative of ‘prevention through selective abortion’ would urge women to terminate wanted pregnancies. However, when screening is conducted in the preconception period, carrier couples can avoid the birth of affected children by other means than selective abortion, for instance preimplantation genetic diagnosis. To the extent that this increased control over passing on a genetic disorder raises questions of parental responsibility, it seems necessary that the account of the aims of EUCS is wider than only in terms of enhancing reproductive autonomy. 
601 |a Université 
601 |a Autonomie 
650 4 |a expanded carrier screening 
650 4 |a preconception carrier screening 
650 4 |a procreative beneficence 
650 4 |a procreative non-maleficence 
650 4 |a reproductive autonomy 
650 4 |a responsible parenthood 
652 |a NCB:NCH 
700 1 |a Dondorp, Wybo  |e VerfasserIn  |4 aut 
700 1 |e VerfasserIn  |0 (DE-588)1158273800  |0 (DE-627)1021955698  |0 (DE-576)503790311  |4 aut  |a Wert, Guido de 
773 0 8 |i Enthalten in  |t Bioethics  |d Oxford [u.a.] : Wiley-Blackwell, 1987  |g 33(2019), 5, Seite 568-576  |h Online-Ressource  |w (DE-627)271596708  |w (DE-600)1480658-7  |w (DE-576)078707986  |x 1467-8519  |7 nnas 
773 1 8 |g volume:33  |g year:2019  |g number:5  |g pages:568-576 
856 |u https://onlinelibrary.wiley.com/doi/pdfdirect/10.1111/bioe.12555  |x unpaywall  |z Vermutlich kostenfreier Zugang  |h publisher [deprecated] 
856 4 0 |u https://onlinelibrary.wiley.com/doi/abs/10.1111/bioe.12555  |x Verlag  |7 1 
856 |u https://doi.org/10.1111/bioe.12555  |x doi  |3 Volltext 
951 |a AR 
ELC |a 1 
ITA |a 1  |t 1 
LOK |0 000 xxxxxcx a22 zn 4500 
LOK |0 001 3741284297 
LOK |0 003 DE-627 
LOK |0 004 1727506863 
LOK |0 005 20210928154540 
LOK |0 008 200820||||||||||||||||ger||||||| 
LOK |0 040   |a DE-Tue135  |c DE-627  |d DE-Tue135 
LOK |0 092   |o n 
LOK |0 852   |a DE-Tue135 
LOK |0 852 1  |9 00 
LOK |0 935   |a ixzs  |a ixzo 
LOK |0 936ln  |0 1550736558  |a NCH 
LOK |0 936ln  |0 1442052813  |a NCB 
LOK |0 939   |a 20-08-20  |b l01 
OAS |a 1 
ORI |a SA-MARC-ixtheoa001.raw