7
views
0
recommends
+1 Recommend
0 collections
    0
    shares
      • Record: found
      • Abstract: found
      • Article: not found

      Parental views on informed consent for expanded newborn screening

      research-article

      Read this article at

      ScienceOpenPublisherPMC
      Bookmark
          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          Background  An increasing array of rare inherited conditions can be detected as part of the universal newborn screening programme. The introduction and evaluation of these service developments require consideration of the ethical issues involved and appropriate mechanisms for informing parents and gaining consent if required. Exploration of parental views is needed to inform the debate and specifically consider whether more flexible protocols are needed to fit with the public perception of new developments in this context.

          Objective  This study has been undertaken to explore perceptions and attitudes of parents and future parents to an expanded newborn screening programme in the United Kingdom and the necessary information provision and consent processes.

          Design and participants  A mixed methods study involving focus groups ( n = 29) and a web‐survey ( n = 142) undertaken with parents and future parents.

          Results and conclusions  Parents want guaranteed information provision with clear decision‐making powers and an awareness of the choices available to them. The difference between existing screening provision and expanded screening was not considered to be significant enough by participants to warrant formal written, informed consent for expanded screening. It is argued that the ethical review processes need to be more flexible towards the provision of information and consent processes for service developments in newborn screening.

          Related collections

          Author and article information

          Journal
          Health Expect
          Health Expect
          10.1111/(ISSN)1369-7625
          HEX
          Health Expectations : An International Journal of Public Participation in Health Care and Health Policy
          Blackwell Publishing Ltd (Oxford, UK )
          1369-6513
          1369-7625
          12 August 2011
          September 2013
          : 16
          : 3 ( doiID: 10.1111/hex.2013.16.issue-3 )
          : 239-250
          Affiliations
          [ 1 ]Senior Lecturer, Department of Industrial Design, Coventry University, Coventry
          [ 2 ]Research Assistant, Applied Research Centre in Health and Lifestyle Interventions, Faculty of Health and Life Sciences, Coventry University, Coventry, UK
          Author notes
          [*]Louise Moody BSc (Hons), PhD 
Department of Industrial Design 
Coventry University 
Priory Street 
Coventry CV1 5FB 
UK 
E‐mail: L.moody@ 123456coventry.ac.uk
          Article
          PMC5060664 PMC5060664 5060664 HEX710
          10.1111/j.1369-7625.2011.00710.x
          5060664
          21838829
          c767a4c1-36b9-452a-89b2-869bac4a11c8
          © 2011 John Wiley & Sons Ltd
          History
          Page count
          Figures: 1, Tables: 2, Pages: 12
          Categories
          Part 1
          Original Research Papers
          Custom metadata
          2.0
          September 2013
          Converter:WILEY_ML3GV2_TO_NLMPMC version:4.9.4 mode:remove_FC converted:06.10.2016

          expanded newborn screening,informed consent,heel‐prick test

          Comments

          Comment on this article