Participant understanding and recall of informed consent for induced pluripotent stem cell biobanking.
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 received. The median duration between recruitment and follow-up questioning was 313 days (range 10-573 days). The majority of participants (n = 129, 91.5 %) believed they understood what a stem cell was; however, only 22 (16.1 %) correctly answered questions related to basic stem cell properties. We found no statistically significant difference in responses from participants with different levels of education, or those with a health sciences background. The poor understanding amongst participants of iPSC research is unlikely to be unique to our study and may impact future research if not improved. As such, there is a need to develop an easily understood yet comprehensive consent process to ensure ongoing ethical progress of iPSC biobanking.
Department of Surgery, Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, University of Melbourne, 32 Gisborne Street, East Melbourne, VIC, Australia.|Department of Surgery, Monash University, Clayton, VIC, Australia.
Tristan
T
McCaughey
Department of Surgery, Monash University, Clayton, VIC, Australia.
Christine Y
CY
Chen
Department of Surgery, Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, University of Melbourne, 32 Gisborne Street, East Melbourne, VIC, Australia.
Elisabeth
E
De Smit
Department of Surgery, Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, University of Melbourne, 32 Gisborne Street, East Melbourne, VIC, Australia.
Gwyneth
G
Rees
Department of Surgery, Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, University of Melbourne, 32 Gisborne Street, East Melbourne, VIC, Australia.|Singapore Eye Research Institute, Singapore National Eye Centre, Singapore, Singapore.|Duke-NUS Medical School, Singapore, Singapore.
Eva
E
Fenwick
Department of Surgery, Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, University of Melbourne, 32 Gisborne Street, East Melbourne, VIC, Australia.
Lisa S
LS
Kearns
Lions Eye Institute, Centre for Ophthalmology and Visual Science, University of Western Australia, Perth, WA, Australia.|Menzies Institute for Medical Research, School of Medicine, University of Tasmania, Hobart, TAS, Australia.
David A
DA
Mackey
School of Social Science, Monash University, Clayton, VIC, Australia.
Casimir
C
MacGregor
Stem Cells Australia, Department of Anatomy and Neuroscience, The University of Melbourne, Parkville, VIC, Australia.
Megan
M
Munsie
Wicking Dementia Research and Education Centre, University of Tasmania, Hobart, TAS, Australia.
Anthony L
AL
Cook
Department of Surgery, Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, University of Melbourne, 32 Gisborne Street, East Melbourne, VIC, Australia.
Alice
A
Pébay
Department of Surgery, Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, University of Melbourne, 32 Gisborne Street, East Melbourne, VIC, Australia. hewitt.alex@gmail.com.|Lions Eye Institute, Centre for Ophthalmology and Visual Science, University of Western Australia, Perth, WA, Australia. hewitt.alex@gmail.com.|Menzies Institute for Medical Research, School of Medicine, University of Tasmania, Hobart, TAS, Australia. hewitt.alex@gmail.com.
Alex W
http://orcid.org/0000-0002-5123-5999
AW
Hewitt
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D018070:Biological Specimen Banks; D003710:Demography; D005260:Female; D006801:Humans; D057026:Induced Pluripotent Stem Cells / Q000166:cytology*; D007258:Informed Consent; D008297:Male; D008875:Middle Aged; D011795:Surveys and Questionnaires
Biobank; HeLa; Informed consent; Keywords; Stem cell