2020-05 GenV Parent Consultations Survey Working Paper
online resourceposted on 11.01.2021, 00:16 by Elizabeth Hughes, William Siero, Simon Welsh, Ben Edwards, Alisha GulencAlisha Gulenc, Melissa WakeMelissa Wake
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.