Parental Access to Children's Raw Genomic Data in Canada: Legal Rights and Professional Responsibility.

摘要: Children with rare and common diseases now undergo whole genome sequencing (WGS) in clinical research contexts. Parents sometimes request access to their child's raw genomic data, pursue own analyses or for onward sharing health professionals researchers. These requests raise legal, ethical, practical issues parents alike. The advent of widespread WGS pediatrics occurs a context where privacy data protection law remains focused on giving individuals control-oriented rights respect personal information. Acting stead best interests, are generally the ones who will be exercising these informational behalf child. In this paper, we map contours parental authority data. We consider three use cases: hospital-based researchers, healthcare acting clinical-diagnostic capacity, "pure" academic researchers at public institution. Our seeks answer two principal questions: Do have right data? If so, what limits right? Primarily laws Ontario, Canada's most populous province, secondary focus other provinces (Quebec, British Columbia, Alberta) European Union, our findings include (1) general information about children, but that is more capacious than context; (2) extends form; (3) consideration interests child may materially limit legal child; (4) ability exercise transferred from children when they gain decision-making capacity both contexts, nuance former. With mind, argue professional guidelines, which concerned obligations interpret return results, assist furthering rights. conclude by crafting recommendations contexts faced