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Essays in Honour of Bartha Maria Knoppers
Professor Bartha Maria Knoppers stepped down from the Canada Research Chair in Law and Medicine at McGill University in April 2024, a post she held for more than 20 years. Professor Knoppers consistently prioritized “humanity” in her academic work and in policymaking. As such, she forged a strong intellectual legacy, notably through her work on the human right to science, genomic and health-related data sharing, genome editing, human reproductive technologies, stem cell research, the rights of children, and population health. This collection of essays honours her extraordinary academic contributions to law, policy, and medicine.
Essays in Honour of Bartha Maria Knoppers
Professor Bartha Maria Knoppers stepped down from the Canada Research Chair in Law and Medicine at McGill University in April 2024, a post she held for more than 20 years. Professor Knoppers consistently prioritized “humanity” in her academic work and in policymaking. As such, she forged a strong intellectual legacy, notably through her work on the human right to science, genomic and health-related data sharing, genome editing, human reproductive technologies, stem cell research, the rights of children, and population health. This collection of essays honours her extraordinary academic contributions to law, policy, and medicine.
Abstract
Under Article 24 of the Convention on the Rights of the Child (crc), children have the right to the highest attainable standard of health. One component of this right that has received little attention is the connection between children’s health and their participation in health-related research. This represents a missed opportunity in the full realisation of the right to health. This paper accordingly argues that Article 24 should obligate or incentivise State Parties to create more research opportunities for children in implementing this right. It explores the links between paediatric research and children’s health, highlighting the impacts of the lack of research on the paucity or absence of many treatment and prevention options for childhood diseases. It also considers the application of other rights which may be implicated in paediatric research. While paediatric health-related research is imperative, it must occur within a framework which respects all children’s rights.