The Right not to Know and the Dynamics of Biomedical Knowledge Production: Fighting a losing battle?. Wehling, P. In Routledge International Handbook of Ignorance Studies. Routledge, 2 edition, 2022. Num Pages: 10abstract bibtex The development and acceptance of a “right not to know” in the context of genetic and genomic medicine appears to be a both provocative and fragile achievement in modern, self-proclaimed “knowledge societies”. It is hardly surprising, therefore, that the right not to know one’s genetic make-up, although protected by law in many countries, is continuously contested in bioethical and medical discourses as well as challenged by new biomedical technologies such as whole genome sequencing, non-invasive prenatal testing and expanded carrier screening. While earlier bioethical criticisms were mainly based on the mistaken assumption that ignorance is fundamentally incompatible with autonomy and rationality, more recent objections tend to marginalize individual autonomy altogether, favoring instead renewed forms of medical paternalism. In addition, the right not to know increasingly is rejected by invoking a “duty to know” one’s own genetic predispositions or those of one’s prospective children in the name of solidarity or responsible parenthood. Contrary to such views, it is argued in this chapter that, given the ambiguities of genetic and genomic knowledge, not wanting to know is, and continues to be, a legitimate and reasonable response to the dynamics of biomedical knowledge production – all the more so as the purportedly superior will to knowledge is itself anything but devoid of moral and political ambivalences.
@incollection{wehling_right_2022,
edition = {2},
title = {The {Right} not to {Know} and the {Dynamics} of {Biomedical} {Knowledge} {Production}: {Fighting} a losing battle?},
isbn = {978-1-00-310060-7},
shorttitle = {The {Right} not to {Know} and the {Dynamics} of {Biomedical} {Knowledge} {Production}},
abstract = {The development and acceptance of a “right not to know” in the context of genetic and genomic medicine appears to be a both provocative and fragile achievement in modern, self-proclaimed “knowledge societies”. It is hardly surprising, therefore, that the right not to know one’s genetic make-up, although protected by law in many countries, is continuously contested in bioethical and medical discourses as well as challenged by new biomedical technologies such as whole genome sequencing, non-invasive prenatal testing and expanded carrier screening. While earlier bioethical criticisms were mainly based on the mistaken assumption that ignorance is fundamentally incompatible with autonomy and rationality, more recent objections tend to marginalize individual autonomy altogether, favoring instead renewed forms of medical paternalism. In addition, the right not to know increasingly is rejected by invoking a “duty to know” one’s own genetic predispositions or those of one’s prospective children in the name of solidarity or responsible parenthood. Contrary to such views, it is argued in this chapter that, given the ambiguities of genetic and genomic knowledge, not wanting to know is, and continues to be, a legitimate and reasonable response to the dynamics of biomedical knowledge production – all the more so as the purportedly superior will to knowledge is itself anything but devoid of moral and political ambivalences.},
booktitle = {Routledge {International} {Handbook} of {Ignorance} {Studies}},
publisher = {Routledge},
author = {Wehling, Peter},
year = {2022},
note = {Num Pages: 10},
keywords = {PRINTED (Fonds papier)},
}
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