Oral Presentation Australasian Association of Bioethics & Health Law and New Zealand Bioethics Conference

No longer merely ‘vulnerable’ participants: a new focus on disability and disabled people in the National Ethics Advisory Committee standards for health and disability research (900)

Hilary j Stace 1
  1. Victoria University of Wellington, Wellington, New Zealand

New Zealand has a health and disability system with health-related disability policy developed and implemented through the Ministry of Health, although ‘disability’ is a minor focus. In 2017 the National Ethics Advisory Committee and the Ministry of Health began a major review of the standards for bioethical research for Health and Disability Ethics Committees. A significant part of this process was the alignment of international bioethics principles with the principles of Te Ara Tika (guidelines for Māori research ethics developed from a Te Ao Maori worldview). However, disability still remained largely invisible although disabled people were no longer considered merely problematic ‘vulnerable’ participants. After questions were raised by members of the disability community an extra chapter on disability was co-developed through a participatory process with disabled people and disability researchers. This will also help New Zealand meet its obligations under the United Nations Convention on the Rights of Persons with Disabilities whereby research with and by disabled people is vital and data urgently needed. The presentation will outline what happened.