RT Article
T1 Moving from ‘fully’ to ‘appropriately’ informed consent in genomics: The PROMICE framework
JF Bioethics
VO 36
IS 6
SP 655
OP 665
A1 Koplin, Julian J.
A1 Gyngell, Christopher
A1 Savulescu, Julian
A1 Vears, Danya F.
LA English
PB Wiley-Blackwell
YR 2022
UL https://www.ixtheo.de/Record/1807168913
AB Genomic sequencing technologies (GS) pose novel challenges not seen in older genetic technologies, making traditional standards for fully informed consent difficult or impossible to meet. This is due to factors including the complexity of the test and the broad range of results it may identify. Meaningful informed consent is even more challenging to secure in contexts involving significant time constraints and emotional distress, such as when rapid genomic testing (RGS) is performed in neonatal intensive care units. In this article, we propose that informed consent matters not for its own sake, but because obtaining it furthers a range of morally important goals, such as promoting autonomy, well-being, and trust in medicine. These goals form the basis of a new framework [PROmoting Morally Important Consent Ends (PROMICE)] for assessing the ethical appropriateness of various informed consent models. We illustrate this framework with two examples: (a) a tiered and layered consent model for obtaining consent for GS, and (b) consent for RGS in critically ill newborns. We conclude that appropriately—rather than fully—informed consent provides the correct standard for genomic medicine and research.
K1 rapid genomic testing
K1 Informed Consent
K1 Genomics
K1 Autonomy
DO 10.1111/bioe.13027