1. Objectifs

Intentions :
«This article examines the legal rights of parents to access their child’s raw WGS [whole genome sequencing] data generated in healthcare and health research contexts.» (p. 3)

Questions/Hypothèses :
Authors «aim to answer the following questions: [D]o parents have a legal right to access their child’s health information upon request in clinical and research contexts? [D]o access rights, where applicable, extend to raw genomic sequence data […]? Under what circumstances, if any, can a healthcare institution or researcher refuse a parental access request (e.g., to protect the child’s best interests)? [W]here a minor is sufficiently mature to understand and appreciate the consequences of access requests, does the legal right of access ultimately reside with the minor?» (p. 3)

2. Méthode

Échantillon/Matériau :
«The principal method of research employed was doctrinal […]. The two principal laws governing information held by either healthcare institutions or public bodies in Ontario were consulted. The statutes were reviewed comprehensively, with a focus on those provisions applicable to parental access to information about their child. Where relevant provisions were found, a search was conducted for related case law from the Information and Privacy Commissioner of Ontario (IPC) or Ontario Superior Courts using WestlawNext Canada and CanLII, two legal databases. [Authors] also reviewed the laws that govern personal information held by public- and private-sector organizations of other populous Canadian provinces (Quebec, Alberta, and British Columbia) as well as the European Union. With regards to the former group, a case law search using the legal databases WestlawNext Canada, CanLII, and SOQUIJ was also conducted.» (p. 4)

Type de traitement des données :
Réflexion critique

3. Résumé

Authors «find that parents’ authority to request access must be exercised on behalf of the child and in that child’s best interests. Health information custodians would have grounds to refuse an access request manifestly not in the child’s best interests. Furthermore, we find that health information custodians likely have a duty to ensure parents are not granted access to a mature minor’s information, unless the minor consents or the parent demonstrates that the minor lacks capacity to make decisions about the disclosure of their health information.» (p. 11) «Only in Quebec, however, has it been found that individuals also have a legal right to access raw clinical data about themselves, even where an individual has already received a report based on the interpretation or analysis of this data. The underlying logic behind this position is that the governing law does not distinguish between raw data and other types of information. Consequently, raw data forming part of an individual’s health record can be the object of an access request.» (p. 8) Moreover, in «Quebec, the Civil Code requires that all decisions concerning a child take into account that child’s interests and rights, including the right of the child to be involved in the decision-making process in a way that is compatible with their maturity.» (p. 9)