Developing model biobanking consent language: what matters to prospective participants?
Laura M BeskowCatherine M Hammack-AviranKathleen M BrelsfordPublished in: BMC medical research methodology (2020)
These results are consistent with other research on public perspectives on biobanking and genomic cohort studies, suggesting that our model language effectively captures commonly expressed reasons for and against participation. Our study enriches this literature by connecting specific consent form disclosures with qualitative data regarding what participants found especially reassuring or concerning and why. Interventions that facilitate individuals' closer engagement with consent information may result in participation decisions more closely aligned with their values.