Liisi Mägi, Ere Uibu, Asgjerd Litleré Moi, Michael Mortensen, Kristin Naustdal, Kaja Põlluste, Margus Lember, Mari Kangasniemi
Collaborative learning linking nursing practice and education - Interview study with master's students and teachers
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highly sensitive nature genomic associated clinical data coupled consentrelated vulnerabilities children together accentuate ethical legal social issues elsi concerning data sharing key implications data sharing kids framework therefore developed address need institutional guidance genomic data governance yet validated among data sharing practitioners practice settings study qualitatively explored areas consensus dissensus kids framework perspectives canadian clinicianscientists genomic researchers irb members pediatric ethicists twelve panelists participated threeround online policy delphi determine desirability feasibility relative importance confidence twelve individual statements kids framework mean iqr calculated panelists ratings determine strength consensus polarity qualitative content analysis panelists written responses used assess degree support statements validated combined ratings qualitative rationales indicated highmoderate consensus least 70 agreement across two contiguous categories low polarity iqr least 10 strong support nine original one new statement reached consensus statements outlined essential elements informed consent process including realistic evaluation benefits risks assurance future ethics oversight secondary data use discrepant views appropriate protections anonymized coded ie deidentified genomic data primary sources dissensus validated statements provide institutions empirically supported best practices sharing genomic associated clinical data involving children perspectives key stakeholders concerted efforts quantify informational risks conveyed patients families needed align data sharing policy stakeholder priorities