RT Article
T1 A burden from birth?: Non-invasive prenatal testing and the stigmatization of people with disabilities
JF Bioethics
VO 33
IS 1
SP 91
OP 97
A1 Rubeis, Giovanni 1981-
A1 Steger, Florian 19XX-
LA English
PB Wiley-Blackwell
YR 2019
UL https://www.ixtheo.de/Record/1727524128
AB 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.
K1 Bioethics
K1 NIPT
K1 disability rights
K1 Eugenics
K1 non-invasive prenatal testing
K1 reproductive autonomy
DO 10.1111/bioe.12518