A burden from birth?: Non-invasive prenatal testing and the stigmatization of people with disabilities
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-invasi...
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| Main Authors: | , |
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| Format: | Article (Journal) |
| Language: | English |
| Published: |
[2019]
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| In: |
Bioethics
Year: 2019, Volume: 33, Issue: 1, Pages: 91-97 |
| ISSN: | 1467-8519 |
| Online Access: | Verlag: https://onlinelibrary.wiley.com/doi/abs/10.1111/bioe.12518
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| Author Notes: | Giovanni Rubeis, Florian Steger |
| Summary: | 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. |
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| Physical Description: | Online Resource |
| ISSN: | 1467-8519 |