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GenV parent consultations survey 2019

  • Authors

    Elizabeth K. Hughes1,2, William Siero1,2, Simon Welsh3, Ben Edwards4, Alisha Gulenc1, Melissa Wake1,2

  • Affiliation

    1 – Murdoch Children’s Research Institute, The Royal Children’s Hospital, Parkville, Victoria, Australia
    2 – Department of Paediatrics, The University of Melbourne, Parkville, Victoria, Australia
    3 – Chorus Consulting, Wodonga, Australia
    4 – Australian National University, Canberra, Australian Capital Territory, Australia

  • Publication date

    September 2020

  • Series number


  • Abstract

    To inform GenV’s design, messaging and materials, we consulted over 500 current and expectant Victorian parents (members of a national data collection panel) in an online survey testing responses to information about GenV, including sections of its draft Parent/Guardian Information Statement. Most parents were supportive of GenV, with very few (< 10 per cent) negative responses. Those who felt most positive were motivated by benefits for themselves and others and by contributing to public good research. Areas of some sensitivity included data security, privacy and confidentiality, and the collection and use of biosamples. Providing information about both the benefits and perceived risks of GenV will be important to enable parents to make informed choices to take part in GenV itself.

  • Keywords

    Parent; Child; Cohort; Consultation; Communication; Data security; Biosamples; Online survey; GenV

  • Citation

    Hughes EK, Siero W, Welsh S, Edwards B, Gulenc A, Wake M (2020). GenV Parent Consultations Survey 2019. Generation Victoria Working Paper 2020-05. DOI:10.25374/MCRI.13004000