Parental perspectives on consent for participation in large-scale, non-biological data repositories

Abstract

BackgroundData sharing presents several challenges to the informed consent process. Unique challenges emerge when sharing pediatric or pregnancy-related data. Here, parent preferences for sharing non-biological data are examined.MethodsGroups (n = 4 groups, 18 participants) and individual interviews (n = 19 participants) were conducted with participants from two provincial, longitudinal pregnancy cohorts (AOB and APrON). Qualitative content analysis was applied to transcripts of semi-structured interviews.ResultsParticipants were supportive of a broad, one-time consent model or a tiered consent model. These preferences were grounded in the perceived obligations for reciprocity and accuracy. Parents want reciprocity among participants, repositories and researchers regarding respect and trust. Furthermore, parents’ worry about the interrelationships between the validity of the consent processes and secondary data use.ConclusionsThough parent participants agree that their research data should be made available for secondary use, they believe their consent is still required. Given their understanding that obtaining and informed consent can be challenging in the case of secondary use, parents agreed that a broad, one-time consent model was acceptable, reducing the logistical burden while maintaining respect for their contribution. This broad model also maintained participant trust in the research and secondary use of their data. The broad, one-time model also reflected parents’ perspectives surrounding child involvement in the consent process. The majority of parents felt decision made during childhood were the parents responsibility and should remain in parental purview until the child reaches the age of majority.Electronic supplementary materialThe online version of this article (doi:10.1186/s40504-016-0034-6) contains supplementary material, which is available to authorized users.

Sharing longitudinal, non-biological birth cohort data: a cross-sectional analysis of parent consent preferences

“…A cross-sectional, online survey was used to assess consent preferences of parents enrolled in two Alberta birth cohorts for the secondary use of adult and child non-biological, de-identified cohort data via a non-biological data repository. This survey represents the final stage of a mixed-methods study examining parental views on privacy, consent and governance in secondary data use; the qualitative findings that preceded and informed survey development are published elsewhere [ 52 – 54 ].…”

“…The online survey was administered via the University of Alberta’s Electronic Patient Reported Outcomes (ePRO) platform. Survey design was based on previous qualitative findings, a literature review of participant and public and parent perspectives on data sharing, and pre-testing using cognitive interviewing (CI) [ 53 , 54 ].…”

“…The CI pre-test involved one-on-one interviews ( n = 9) [ 57 ]. CI recruitment followed the qualitative study [ 53 , 54 ]. During CI interviews, participants completed the draft survey on ePRO (or on paper as needed), while receiving verbal probes from the CI interviewer [ 57 ].…”

Managing and sharing research data in children's palliative care: Risks, benefits and imponderables

“…Professionals working in hospices or community settings were more likely to consent to data sharing than those working in hospital. Manhas et al (2016) explored parental perspectives on paediatric RDRs for non-biological data in Canada and found that parents strongly supported the sharing of their own and their child's non-biological data, but they did express reservations relating to privacy, relationships and governance that should be considered in RDR development. The authors noted that many of the parents found the concepts of data sharing and data repositories a complex topic, meaning that a great deal of information and time was needed for participants to offer truly informed comment.…”

“…EDITORIAL circumstances may be identifiable from minimal amounts of contextual detail (Manhas et al, 2016). Current MRC guidance recommends that under these circumstances research can continue but is subject to General Data Protection Regulation (GDPR) considerations, by managing data disclosure through consent (MRC, 2019).…”