A burden from birth?

• Verfasst von: Rubeis, Giovanni [VerfasserIn]
• Verfasst von: Steger, Florian [VerfasserIn]
• Titel: A burden from birth?
• Titelzusatz: Non-invasive prenatal testing and the stigmatization of people with disabilities
• Verf.angabe: Giovanni Rubeis, Florian Steger
• E-Jahr: 2019
• Jahr: [2019]
• Umfang: 7 S.
• Titel Quelle: Enthalten in: Bioethics
• Ort Quelle: Oxford [u.a.] : Wiley-Blackwell, 1987
• Jahr Quelle: 2019
• Band/Heft Quelle: 33(2019), 1, Seite 91-97
• ISSN Quelle: 1467-8519
• DOI: doi:10.1111/bioe.12518
• Datenträger: Online-Ressource
• Sprache: eng
• Sach-SW: Bioethics
• Sach-SW: NIPT
• Sach-SW: disability rights
• Sach-SW: eugenics
• Sach-SW: non-invasive prenatal testing
• Sach-SW: reproductive autonomy
• K10plus-PPN: 1727524128

Abstract

The notion of being a burden to others is mostly discussed in the context of care-intensive diseases or end-of-life decisions. But the notion is also crucial in decision-making at the beginning of life, namely regarding prenatal testing. Ever more sophisticated testing methods, especially non-invasive prenatal testing (NIPT), allow the detection of genetic traits in the unborn child that may cause disabilities. A positive result often influences the decision of the pregnant women towards a termination of the pregnancy. Thus, critics claim that these testing methods send a negative message to people with disabilities. At the core of this is what we call the burden assumption. This assumption claims that children with disabilities are necessarily a burden to others, especially to their parents and other family members. In this paper, we discuss what being a burden to others means in this context and how such an attitude can be avoided without restraining reproductive autonomy. A closer examination shows that the burden assumption is mostly based on misinformation and a false model of disability. Empirical studies as well as narrative evidence from parents who raise a child with disabilities show that the burden assumption is wrong. Raising a child with disabilities does not necessarily mean a decrease in the quality of life. We show how the burden assumption can be challenged through an advanced genetic counselling that combines empirical evidence with narratives from a first-person perspective.