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

Frontiers in Genetics, 2021

17 Pages Posted: 18 Aug 2021

See all articles by Michael J.S. Beauvais

Michael J.S. Beauvais

McGill University - Centre of Genomics and Policy

Adrian Thorogood

Universite du Luxembourg - Luxembourg Centre for Systems Biomedicine

Michael Szego

University of Toronto, Centre for Bioethics

Karine Sénécal

McGill University - Centre for Genomics and Policy

Ma'n H. Zawati

McGill University - Centre of Genomics and Policy

Bartha Maria Knoppers

Centre of Genomics and Policy

Date Written: March 5, 2021

Abstract

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

Note: Funding: BK, AT, and MB received financial support from the Government of Canada through Genome Canada, Genome Quebec, and the Ontario Genomics Institute (OGI-148). KS and MZ received financial support from the PRecision Oncology for Young peopLE 2 (PROFYLE 2) program and through funds from the Terry Fox Research Institute and all other funders supporting PROFYLE 2.

Declaration of Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Keywords: Whole Genome Sequencing, Personal Genomics, Pediatrics, Privacy, Individual Access, Ethics, Consent

Suggested Citation

Beauvais, Michael J.S. and Thorogood, Adrian and Szego, Michael and Sénécal, Karine and Zawati, Ma'n H. and Knoppers, Bartha Maria, Parental Access to Children’s Raw Genomic Data in Canada: Legal Rights and Professional Responsibility (March 5, 2021). Frontiers in Genetics, 2021, Available at SSRN: https://ssrn.com/abstract=3813462

Michael J.S. Beauvais

McGill University - Centre of Genomics and Policy ( email )

740 Ave Dr Penfield
Montreal, Quebec H3A0G1
Canada

Adrian Thorogood

Universite du Luxembourg - Luxembourg Centre for Systems Biomedicine ( email )

2 Avenue de l'Université
Esch-sur-Alzette
Luxembourg

Michael Szego

University of Toronto, Centre for Bioethics ( email )

Toronto, Ontario M5S 3G8
Canada

Karine Sénécal

McGill University - Centre for Genomics and Policy ( email )

740 Dr. Penfield Avenue, Suite 5200
Montreal, Quebec H3A 0G1
Canada

Ma'n H. Zawati (Contact Author)

McGill University - Centre of Genomics and Policy ( email )

740 Dr. Penfield Avenue, Suite 5200
Montreal, Quebec H3A 0G1
Canada

Bartha Maria Knoppers

Centre of Genomics and Policy ( email )

3640 rue University
Rm W-315, Strathcona Anatomy & Dentistry Building
Montréal, QC H3A 0C7
Canada

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