Childhood rare diseases and the UN convention on the rights of the child
Lisa Matthews, Vaughan Chin, Marisa Taliangis, Amanda Samanek, Gareth Baynam
Abstract
This letter discusses an initiative that considered the rights of a child living with a rare disease in the context of the United Nations Convention on the Rights of the Child (UNCRC). The aim was to inform laypeople on the intersection between the UNCRC and rare and undiagnosed diseases. The Project was initiated in Western Australia for a national audience, with a view that it might also provide a framework that is translatable to other jurisdictions internationally. This letter discusses some of the key themes raised by the Project and the potential for further work.
Topics & Concepts
Human geneticsPolitical scienceConvention on the Rights of the ChildMedicineHuman rightsGeneticsLawBiologyGeneGenomics and Rare DiseasesEthics and Legal Issues in Pediatric HealthcarePharmaceutical studies and practices