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Type: Journal article
Title: Public perspectives on consent for the linkage of data to evaluate vaccine safety
Author: Berry, J.
Gold, M.
Ryan, P.
Duszynski, K.
Braunack-Mayer, A.
Citation: Vaccine, 2012; 30(28):4167-4174
Publisher: Elsevier Sci Ltd
Issue Date: 2012
ISSN: 0264-410X
Statement of
Jesia G. Berry, Michael S. Gold, Philip Ryan, Katherine M. Duszynski and Annette J. Braunack-Mayer
Abstract: INTRODUCTION: We sought community opinion on consent alternatives when linking childhood immunisation and hospital attendance records for the purpose of vaccine safety surveillance. METHODS: We conducted computer-assisted telephone interviewing (CATI) of a sample of rural and metropolitan residents of South Australia in 2011. RESULTS: Of 2002 households interviewed (response rate 55.6%), 96.4% supported data linkage for postmarketing surveillance of vaccines; very few were completely opposed (1.5%) or undecided (2.2%). The majority (75.3%) trusted the privacy protections used in data linkage and most wished to have minimal or no direct involvement, preferring either opt-out consent (40.4%) or no consent (30.6%). A quarter of respondents (24.6%) favoured opt-in consent, but their preferences were divergent; half requested consent be sought prior to every use (11.4%) while the remainder preferred to give broad consent just once (3.4%) or renewed at periodic intervals (9.8%). Over half of the respondents gave higher priority to rapid vaccine safety surveillance (56.5%) rather than first seeking parental consent (26.6%) and one in seven was undecided (14.5%). Although 91.6% of respondents believed childhood vaccines are safe, over half (53.1%) were very or somewhat concerned that a vaccine could cause a serious reaction. Nevertheless, 92.4% of the parents in the sample (556/601) reported every child in their care as being fully immunised according to the National Immunisation Program schedule. Only 3.7% of parents (22/601) reported one or more children as under immunised, and 3.9% (23/601) reported that none of their children were immunised. CONCLUSIONS: This survey demonstrates that data linkage for vaccine safety surveillance has substantial community support and that a system utilising opt-out consent or no consent was preferred to one using opt-in consent. These findings should inform public health policy and practice; data linkage should be established where feasible to address limitations in passive surveillance systems.
Keywords: Vaccine Assessment Using Linked Data (VALiD) Working Group; Humans; Drug Toxicity; Vaccines; Vaccination; Adverse Drug Reaction Reporting Systems; Public Opinion; Adolescent; Adult; Aged; Aged, 80 and over; Middle Aged; South Australia; Female; Male; Interviews as Topic; Young Adult
Rights: Copyright © 2012 Elsevier Ltd. All rights reserved.
RMID: 0020119431
DOI: 10.1016/j.vaccine.2012.04.056
Appears in Collections:Public Health publications

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