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

Life Sciences, Society and Policy
Kiran P ManhasSuzanne C Tough

Abstract

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. 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. 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. 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...Continue Reading

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Citations

Apr 15, 2018·Journal of Health Services Research & Policy·Nicola HoweElaine McColl
Sep 11, 2020·Journal of Advanced Nursing·Nicky HarrisUNKNOWN Joint Research Group for Together for Short Lives/Association of Paediatric Palliative Medicine
Nov 14, 2018·BMC Medical Informatics and Decision Making·Kiran Pohar ManhasSuzanne C Tough
Jan 1, 2020·Sexuality Research & Social Policy : Journal of NSRC : SR & SP·Margaret MatsonBrian Mustanski
Jan 9, 2021·Nature Genetics·Kieran C O'DohertyWylie Burke
May 17, 2021·MCN. the American Journal of Maternal Child Nursing·Elissa Z FaroKathi C Huddleston

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