RT Article
T1 The New Genetics and Informed Consent: Differentiating Choice to Preserve Autonomy
JF Bioethics
VO 27
IS 6
SP 348
OP 355
A1 Bunnik, Eline M.
A1 Jong, Antina de
A1 Nijsingh, Niels
A1 Wert, Guido M. W. R. de
A2 Jong, Antina de
A2 Nijsingh, Niels
A2 Wert, Guido M. W. R. de
LA English
YR 2013
UL https://ixtheo.de/Record/1781884684
AB The advent of new genetic and genomic technologies may cause friction with the principle of respect for autonomy and demands a rethinking of traditional interpretations of the concept of informed consent. Technologies such as whole-genome sequencing and micro-array based analysis enable genome-wide testing for many heterogeneous abnormalities and predispositions simultaneously. This may challenge the feasibility of providing adequate pre-test information and achieving autonomous decision-making. At a symposium held at the 11th World Congress of Bioethics in June 2012 (Rotterdam), organized by the International Association of Bioethics, these challenges were presented for three different areas in which these so-called ‘new genetics’ technologies are increasingly being applied: newborn screening, prenatal screening strategies and commercial personal genome testing. In this article, we build upon the existing ethical framework for a responsible set-up of testing and screening offers and reinterpret some of its criteria in the light of the new genetics. As we will argue, the scope of a responsible testing or screening offer should align with the purpose(s) of testing and with the principle of respect for autonomy for all stakeholders involved, including (future) children. Informed consent is a prerequisite but requires a new approach. We present preliminary and general directions for an individualized or differentiated set-up of the testing offer and for the informed consent process. With this article we wish to contribute to the formation of new ideas on how to tackle the issues of autonomy and informed consent for (public) healthcare and direct-to-consumer applications of the new genetics.
K1 personal genome testing
K1 direct-to-consumer genetic testing
K1 prenatal screening
K1 neonatal screening
K1 new genetics
K1 Informed Consent
K1 Autonomy
DO 10.1111/bioe.12030