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...
| Главные авторы: | ; |
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| Формат: | Электронный ресурс Статья |
| Язык: | Английский |
| Проверить наличие: | HBZ Gateway |
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| Fernleihe: | Fernleihe für die Fachinformationsdienste |
| Опубликовано: |
Wiley-Blackwell
[2019]
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| В: |
Bioethics
Год: 2019, Том: 33, Выпуск: 1, Страницы: 91-97 |
| Индексация IxTheo: | NBE Антропология NCH Медицинская этика |
| Другие ключевые слова: | B
reproductive autonomy
B non-invasive prenatal testing B Bioethics B Неинвазивное пренатальное тестирование B Eugenics B disability rights |
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Volltext (Verlag) Volltext (doi) |
| Итог: | 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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| ISSN: | 1467-8519 |
| Второстепенные работы: | Enthalten in: Bioethics
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| Persistent identifiers: | DOI: 10.1111/bioe.12518 |