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...
| Κύριοι συγγραφείς: | ; |
|---|---|
| Τύπος μέσου: | Ηλεκτρονική πηγή Άρθρο |
| Γλώσσα: | Αγγλικά |
| Έλεγχος διαθεσιμότητας: | HBZ Gateway |
| Journals Online & Print: | Φόρτωση...
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| Fernleihe: | Fernleihe für die Fachinformationsdienste |
| Έκδοση: |
Wiley-Blackwell
[2019]
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| Στο/Στη: |
Bioethics
Έτος: 2019, Τόμος: 33, Τεύχος: 1, Σελίδες: 91-97 |
| Σημειογραφίες IxTheo: | NBE Ανθρωπολογία NCH Ιατρική Ηθική |
| Άλλες λέξεις-κλειδιά: | B
reproductive autonomy
B non-invasive prenatal testing B Bioethics B Eugenics B disability rights B Μη επεμβατικός προγεννητικός έλεγχος |
| Διαθέσιμο Online: |
Volltext (Verlag) Volltext (doi) |
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| 245 | 1 | 2 | |a A burden from birth? |b Non-invasive prenatal testing and the stigmatization of people with disabilities |c Giovanni Rubeis, Florian Steger |
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| 520 | |a 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. | ||
| 650 | 4 | |a Bioethics | |
| 650 | 4 | |a NIPT | |
| 650 | 4 | |a disability rights | |
| 650 | 4 | |a Eugenics | |
| 650 | 4 | |a non-invasive prenatal testing | |
| 650 | 4 | |a reproductive autonomy | |
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| STA | 0 | 0 | |a Noninvasive prenatal testing |
| STF | 0 | 0 | |a 非侵入性胎兒染色體基因檢測 |
| STH | 0 | 0 | |a Неинвазивное пренатальное тестирование |
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