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Consent for newborn screening: screening professionals' and parents' views.

Authors
  • Ulph, F1
  • Dharni, N2
  • Bennett, R3
  • Lavender, T3
  • 1 University of Manchester, United Kingdom. Electronic address: [email protected] , (United Kingdom)
  • 2 University of Manchester, Now Bradford Institute for Health Research, United Kingdom. , (United Kingdom)
  • 3 University of Manchester, United Kingdom. , (United Kingdom)
Type
Published Article
Journal
Public health
Publication Date
Jan 01, 2020
Volume
178
Pages
151–158
Identifiers
DOI: 10.1016/j.puhe.2019.08.009
PMID: 31698137
Source
Medline
Keywords
Language
English
License
Unknown

Abstract

Expansion of newborn bloodspot screening (NBS) within England, which practices an informed consent model, justified examining acceptability and effectiveness of alternative consent models. Qualitative focus groups. Forty-five parents and 37 screening professionals (SPs) participated. Data were analysed using thematic analysis. Parents and SPs initially appeared to have differing views about appropriate consent models. Most parents accepted assumed consent, if adequately informed; however, once aware of bloodspot storage, informed consent was wanted. SPs valued informed consent, but acknowledged it was difficult to obtain. Both samples wanted parents to be informed but were unclear how this could be achieved. Most parents felt NBS was not presented as optional. The simultaneous exploration of parents and SPs views, in real time is original. This rigour avoided the reliance on retrospective accounts which make it difficult to establish how decisions were made at the time. It is also unique in providing pre-interview consent models to drive the depth of data. It was rigorous in member checking. Findings suggested a preference for full disclosure of all information with some parents valuing this more than choice. Both samples queried whether current consent was sufficiently informed and voluntary. Results suggest differing tolerances of consent type if screening is solely for diagnostic purposes vs bloodspot storage. Results highlight the need for caution when examining consent model preferences without also checking knowledge, as opinions may be based on incomplete knowledge. Future research is needed to examine efficacy of proposed changes. National Institute for Health Research Health Technology Assessment HTAProgramme (11/62/02). ISRCTN70227207. Copyright © 2019 The Authors. Published by Elsevier Ltd.. All rights reserved.

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