New genetic tests, new research findings: Do patients and participants have a right to know – and do they have a right not to know?

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Authors: Brownsword, R.

Journal: Law, Innovation and Technology

Volume: 8

Issue: 2

Pages: 247-267

eISSN: 1757-997X

ISSN: 1757-9961

DOI: 10.1080/17579961.2016.1250376

© 2016 Informa UK Limited, trading as Taylor & Francis Group. In the context of the systematic genotyping of UK Biobank’s participants and the piloting of non-invasive pre-natal testing within the screening pathway for Down syndrome, this paper considers the plausibility, basis, scope, and weight of the claim that participants and patients have a right to know as well as a right not to know the results of the genetic analysis undertaken. It also considers the possible relevance to these issues of the landmark decision of the UK Supreme Court in Montgomery v Lanarkshire Health Board.

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