Pyper Evelyn, Henry David, Yates Erika A, Mecredy Graham, Ratnasingham Sujitha, Slegers Brian, Walker Jennifer D
Epidemiologist with the ICES Indigenous Portfolio.
Former CEO and Indigenous lead at ICES. He is currently a professor at Bond University in Australia, professor emeritus at the University of Toronto and an adjunct scientist at ICES.
Healthc Q. 2018 Jan;20(4):6-9. doi: 10.12927/hcq.2018.25431.
Indigenous data governance principles assert that Indigenous communities have a right to data that identifies their people or communities, and a right to determine the use of that data in ways that support Indigenous health and self-determination. Indigenous-driven use of the databases held at the Institute for Clinical Evaluative Sciences (ICES) has resulted in ongoing partnerships between ICES and diverse Indigenous organizations and communities. To respond to this emerging and complex landscape, ICES has established a team whose goal is to support the infrastructure for responding to community-initiated research priorities. ICES works closely with Indigenous partners to develop unique data governance agreements and supports processes, which ensure that ICES scientists must work with Indigenous organizations when conducting research that involves Indigenous peoples.
本土数据治理原则主张,本土社区有权获取识别其民族或社区的数据,并有权利以支持本土健康和自决的方式决定这些数据的使用。由本土主导对临床评估科学研究所(ICES)持有的数据库的使用,促成了ICES与不同本土组织和社区之间持续的合作关系。为应对这一新兴且复杂的局面,ICES组建了一个团队,其目标是为响应社区发起的研究重点提供基础设施支持。ICES与本土合作伙伴紧密合作,制定独特的数据治理协议并支持相关流程,以确保ICES的科学家在开展涉及本土民族的研究时,必须与本土组织合作。