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BME80G Seminar – Ann Mc Cartney, “The Why, What and How of Indigenous Data Sovereignty”
Location: Virtual. Please register here: https://ucsc.zoom.us/
Abstract: In 2007 the General Assembly of the United Nations adopted the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) that supports Indigenous Peoples’ inherent rights to self-determination and governance over Indigenous Peoples, territories and resources. This codification in an international treaty led to the conceptualization of Indigenous Data Sovereignty in 2016. Indigenous Data Sovereignty is defined as the right of Indigenous Peoples to own, control, access and possess data that derive from them, and which pertain to Nation membership, knowledge systems, customs or territories and is not an internationally recognized concept. Practically, Indigenous Data Sovereignty gives decision-making authority to Indigenous Peoples and allows them to decide how best data should be collected, accessed, and used for nation-building. For this reason, Indigenous Data Sovereignty is inextricably linked to Indigenous Data Governance.
This lecture will dive into the why, what, and how of Indigenous Data Sovereignty. Beginning with dive into the history of genomics research and Indigenous Peoples. Then moving into a more in-depth description of both Indigenous Data Sovereignty and Indigenous Data Governance. The lecture will close with highlighting three real world case-studies of genomics projects operationalising Indigenous Data Sovereignty.
About the speaker: Dr. Mc Cartney is a Full Researcher at the University of California, Irvine and a Consultant for the Secretariat of the Convention on Biological Diversity, where she works at the intersection of bioinformatics, bioethics and policy across human and non-human species. Dr. Mc Cartney completed her PhD in Bioinformatics and Molecular Evolution from Dublin City University. After this she carried out a Genomics Aotearoa Postdoctoral Research Fellowship where she created culturally respectful genomic informatics pipelines for the project that were responsive to the needs and rights of Māori. She then moved Stateside and carried out a second Visiting Postdoctoral Fellowship in the Genome Informatics Section at the NHGRI. During this time, she also conducted a detail in the NIH Office of Science Policy. Dr. Mc Cartney then transitioned to the University of California, Santa Cruz’s Genomics Institute as an Assistant Researcher where she worked at the forefront of genomic sequencing technologies to develop more just genomic data infrastructures, policies and frameworks for engagement. She became an elected member of the Executive Council of the Earth BioGenome Project, the Vice-chair of the European Reference Genome Atlas, and the Director of International Partnerships for the Human Pangenome Reference Consortium. She also acted as a “technical expert” for many international science policy initiatives including the DSI Scientific Network, Native Biodata Consortium and the Informal Advisory Group on DSI for the Convention on Biological Diversity. Additionally, Dr. Mc Cartney was part of the team to build the first NIH-funded Tribal Data Repository for American Indian and Alaska Natives.