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Recommended Publications & Policies

Publications & Policies recommended for researchers by PCGL team members, to supplement the materials in the PCGL Training Catalog.

Data Governance​

  • Genetic Non-Discrimination Act. Government of Canada. 2026. English. French.

Indigenous Engagement & Data Sovereignty​

  • A First Nations Guide to the Privacy Act. First Nations Information Governance Centre. 2024. English. French.
  • The CARE Principles for Indigenous Data Governance. Stephanie Carroll, Ibrahim Garba, Oscar Figueroa-Rodríguez, Jarita Holbrook, Raymond Lovett, Simeon Materechera, Mark Parsons, Kay Raseroka, Desi Rodriguez-Lonebear, Robyn Rowe, Rodrigo Sara, Jennifer Walker, Jane Anderson, Maui Hudson. Data Science Journal, 2020. English.
  • Circumpolar Inuit Protocols for Equitable and Ethical Engagement. Inuit Circumpolar Council. 2022. English.
  • DNA on loan: issues to consider when carrying out genetic research with aboriginal families and communities. Laura Arbour, Doris Cook. Community Genetics, 2006. English.
  • Indigenous Data Sovereignty Toolkit. Native Women's Association of Canada (NWAC). 2026. English. French.
  • Indigenous peoples and inclusion in clinical and genomic research: Understanding the history and navigating contemporary engagement. Angela Waanders, Alex Brown, Nadine R. Caron, Alexa Plisiewicz, Sean T. McHugh, Thinh Q. Nguyen, Kaitlin Lehmann, Jeffrey Stevens, Phillip J. Storm, Adam Resnick, Tom Belle Davidson, Sabine Mueller, Cassie Kline. Neoplasia, 2023. English.
  • Inuit Governance Practices. Connie Strayer, Robyn Grebliunas. BCcampus, 2024. English.
  • National Inuit Strategy on Research. Inuit Tapiriit Kanatami. 2018. English. French. Inuktut Qaliujaaqpait. Inuktitut Syllabics (ᐃᓄᒃᑎᑐᑦ ᖃᓂᐅᔮᖅᐸᐃᑦ).
  • Ownership, Control, Access and Possession (OCAP®): The Path to First Nations Information Governance. The First Nations Information Governance Centre. 2014. English.
  • Promoting self-determined Indigenous data governance in Canada: the Métis Health Research and Data Governance Principles. Robert Henry, Chelsea Gabel, Caroline Tait, Kiera Kowalski, Alexandra Nychuk. Health Promotion International, 2026. English.
  • Practical Application of an Indigenous Research Framework and Two Qualitative Indigenous Research Methods: Sharing Circles and Anishnaabe Symbol-Based Reflection. Lynn F. Lavallée. International Journal of Qualitative Methods, 2009. English.
  • Two-eyed seeing: a framework for understanding indigenous and non-indigenous approaches to indigenous health research. Debbie H. Martin. Canadian Journal of Nursing Research Archive, 2012. English.

Equity, Diversity, & Inclusion​

  • Engagement, Governance, Access and Protection (EGAP) Implementation Guide. Jemal Demeke, Brenda Roche, Camille Orridge, Kwame McKenzie. Wellesley Institute, 2023. English.
  • Equity, diversity, and inclusion at the Global Alliance for Genomics and Health. Neerjah Skantharajah, Shakuntala Baichoo, Tiffany F. Boughtwood, Esmeralda Casas-Silva, Subhashini Chandrasekharan, Sanjay M. Dave, Khalid A. Fakhro, Aida B. Falcon de Vargas, Sylvia S. Gayle, Vivek K. Gupta, Rachele Hendricks-Sturrup, Ashley E. Hobb, Stephanie Li, Bastien Llamas, Catalina Lopez-Correa, Mavis Machirori, Jorge Melendez-Zajgla, Mareike A. Millner, Angela J. H. Page, Laura D. Paglione, Maili C. Raven-Adams, Lindsay Smith, Ericka M. Thomas, Judit Kumuthini, Manuel Corpas. Cell genomics, 2023. English.
  • Including multiracial individuals is crucial for race, ethnicity and ancestry frameworks in genetics and genomics. Daphne O. Martschenko, Hannah Wand, Jennifer L. Young, Genevieve L. Wojcik. Nature Genetics, 2023. English.
  • In Pursuit of Health Equity: Defining Stratifiers for Measuring Health Inequality - A Focus on Age, Gender, Income, Education and Geographic Location. Canadian Institute for Health Information, 2018. English.
  • The UN Declaration on the Rights of Indigenous Peoples and Genomics: Ethical Complementarity for Just Research. Ibrahim Garba, Stephanie Russo Carroll. Hastings Center Report, 2024. English.
  • Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field. National Academies of Sciences, Engineering, and Medicine. National Academies Press, 2023. English.

Data Processing & Analysis​

  • A data harmonization pipeline to leverage external controls and boost power in GWAS. Danfeng Chen, Katherine Tashman, Duncan S Palmer, Benjamin Neale, Kathryn Roeder, Alex Bloemendal, Claire Churchhouse, Zheng Tracy Ke. Human Molecular Genetics, 2022. English.
  • Maelstrom Research guidelines for rigorous retrospective data harmonization. Isabel Fortier, Parminder Raina, Edwin R. Van den Heuvel, Lauren E, Griffith, Camille Craig, Matilda Saliba, Dany Doiron, Ronald P. Stolk, Bartha M. Knoppers, Vincent Ferretti, Peter Granda, Paul Burton. International Journal of Epidemiology, 2017. English.