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BMJ Publishing Group, BMJ Open, 11(4), p. e006782, 2014

DOI: 10.1136/bmjopen-2014-006782

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Stakeholder attitudes towards the role and application of informed consent for newborn bloodspot screening: a study protocol

This paper is made freely available by the publisher.
This paper is made freely available by the publisher.

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Abstract

Introduction: Newborn bloodspot screening (NBS) involves testing a small sample of blood taken from the heel of the newborn for a number of serious and lifelimiting conditions. In Canada, newborn screening programmes fall under provincial and territorial jurisdiction with no federal coordination. To date, we know very little about the underlying beliefs around different consent practices or how terminology is interpreted by different individuals. Differences in attitudes may have important healthcare consequences. This study will provide empirical data comparing stakeholder opinions on their understanding of consent-related terminology, the perceived applicability of different consent approaches to newborn screening, and the requirements of these different approaches.