Negotiating interests: revisiting the role of consent in newborn genetic screening

Wale, J ORCID: 0000-0002-9210-029X (2020) Negotiating interests: revisiting the role of consent in newborn genetic screening. In: The Society of Legal Scholars Annual Conference, 1 - 4 September 2020, University of Exeter, UK [online].

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Abstract

With the development of new genetic sequencing technologies, comes a timely opportunity to revisit the role and function of consent in newborn blood-based screening (NBS) programmes. Whilst approaches to parental (proxy) consent have varied, pressure to expand the range of conditions and information made available from NBS might be predicted in the future. This paper pursues four lines of inquiry. First, expansion invites re-examination of the original aims and rationales for NBS. Second, the paper examines the significance of using specific inclusion or exclusion criteria against a backcloth of multiple decision-making opportunities (for testing, reporting, storage, research etc). Third, recognising the need for clarity and transparency in public health policy, we unpick the values, interests and considerations underpinning informational exchange and consent processes in existing NBS programmes. Finally, against a predicted framework of future expansion, we ask whether existing proxy consent models can demonstrate respect for, or otherwise promote current or future interests; addressing whose, and what negotiable and non-negotiable interests might be at stake along the way.

Item Type:	Conference or Workshop Item (Speech)
Keywords:	newborn genetic screening
Subjects:	K Law > K Law (General) R Medicine > RA Public aspects of medicine R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine
Divisions:	Bath Business School
Date Deposited:	16 Nov 2020 14:54
Last Modified:	23 Dec 2022 05:30
URI / Page ID:	https://researchspace.bathspa.ac.uk/id/eprint/13430

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