title: Parental perspectives on consent for participation in large-scale, non-biological data repositories.
abstract: BACKGROUND
  Data 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.
  
  
  METHODS
  Groups (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.
  
  
  RESULTS
  Participants 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.
  
  
  CONCLUSIONS
  Though 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.
authors.affiliation: Child Development Centre, c/o 2888 Shaganappi Trail NW, Calgary, AB, T3B 6A8, Canada. kpmanhas@ucalgary.ca.
authors.forename: Kiran Pohar
authors.initials: KP
authors.lastname: Manhas
authors.affiliation: MacKimmie Library Tower, 2500 University Drive Northwest, Calgary, AB, T2N 1N4, Canada. sapage@ucalgary.ca.
authors.forename: Stacey
authors.initials: S
authors.lastname: Page
authors.affiliation: Child Development Centre, c/o 2888 Shaganappi Trail NW, Calgary, AB, T3B 6A8, Canada. sxdodd@ucalgary.ca.
authors.forename: Shawn X
authors.identifier: http://orcid.org/0000-0002-4516-1305
authors.initials: SX
authors.lastname: Dodd
authors.affiliation: Child Development Centre, c/o 2888 Shaganappi Trail NW, Calgary, AB, T3B 6A8, Canada. nicole.letourneau@ucalgary.ca.
authors.forename: Nicole
authors.initials: N
authors.lastname: Letourneau
authors.affiliation: Community Member, Calgary, Canada. aleta.ambrose@albertahealthservices.ca.
authors.forename: Aleta
authors.initials: A
authors.lastname: Ambrose
authors.affiliation: Child and Youth Data Lab, Alberta Center for Child Family and Community Research, 9925 109 St NW, Edmonton, AB, T5J 3M9, Canada. xcui@research4children.com.
authors.forename: Xinjie
authors.initials: X
authors.lastname: Cui
authors.affiliation: Child Development Centre, c/o 2888 Shaganappi Trail NW, Calgary, AB, T3B 6A8, Canada. stough@ucalgary.ca.
authors.forename: Suzanne C
authors.initials: SC
authors.lastname: Tough
mesh_terms: D032882:Comprehension; D005260:Female; D017144:Focus Groups; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D033181:Information Dissemination / Q000379:methods; D007407:Interviews as Topic; D008137:Longitudinal Studies; D008297:Male; D033282:Parental Consent / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research; D012107:Research Design
keywords: Consent; Data sharing; Non-biological data; Parents; Pediatric