A burden from birth? Non‐invasive prenatal testing and the stigmatization of people with disabilities. (21st November 2018)

• Record Type: Journal Article
• Authors: Rubeis, Giovanni; Steger, Florian
• Is Part Of: Bioethics. Volume 33:Number 1(2019)
• Page Start: 91
• Page End: 97
• Publication Date: 2018-11-21
• Subjects: Bioethics -- disability rights -- eugenics -- NIPT -- non‐invasive prenatal testing -- reproductive autonomy; Bioethics -- Periodicals; 174.957
• DOI: 10.1111/bioe.12518
• Languages: English
• ISSNs: 0269-9702

Abstract

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.