A policy Delphi study to validate the key implications of data sharing (KIDS) framework for pediatric genomics in Canada.
Vasiliki Nataly RahimzadehGillian BartlettBartha Maria KnoppersPublished in: BMC medical ethics (2021)
The validated statements provide institutions with empirically supported best practices for sharing genomic and associated clinical data involving children from the perspectives of key stakeholders. Concerted efforts to quantify informational risks that can be conveyed to patients and families are further needed to align data sharing policy with stakeholder priorities.
Keyphrases
- healthcare
- electronic health record
- social media
- public health
- health information
- end stage renal disease
- newly diagnosed
- mental health
- ejection fraction
- primary care
- young adults
- chronic kidney disease
- peritoneal dialysis
- copy number
- risk assessment
- data analysis
- single cell
- gene expression
- dna methylation
- human health
- genome wide