Journal article

Participant understanding and recall of informed consent for induced pluripotent stem cell biobanking

Tristan McCaughey, Christine Y Chen, Elisabeth De Smit, Gwyneth Rees, Eva Fenwick, Lisa S Kearns, David A Mackey, Casimir MacGregor, Megan Munsie, Anthony L Cook, Alice Pebay, Alex W Hewitt



The ability to generate human induced pluripotent stem cells (iPSCs) has opened new avenues for human disease modelling and therapy. The aim of our study was to determine research participants' understanding of the information given when donating skin biopsies for the generation of patient-specific iPSCs. A customised 35-item questionnaire based on previous iPSC consent guidelines was sent to participants who had previously donated samples for iPSC research. The questionnaire asked pertinent demographic details, participants' motivation to take part in iPSC research and their attitudes towards related ethical issues. 234 participants were contacted with 141 (60.3 %) complete responses receiv..

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Awarded by National Health and Medical Research Council (NHMRC)

Awarded by BrightFocus Foundation

Awarded by NHMRC

Awarded by Australian Research Council

Funding Acknowledgements

This work was supported by grants from the National Health and Medical Research Council (NHMRC) (APP1059369, APP1023911), the BrightFocus Foundation (G2 013136), Retina Australia, the Ophthalmic Research Institute of Australia and the Clifford Craig Medical Research Trust. EF, GR and AWH are funded by NHMRC Fellowships (APP1072987, APP1061801 and APP1103329, respectively), whilst AP is supported by an Australian Research Council Future Fellowship (FT140100047). CERA receives operational infrastructure support from the Victorian Government.