The Human Pangenome Reference Consortium (HPRC) is committed to transparency, ensuring that potential participants fully understand the study’s purpose, risks, and data-sharing practices so they can make well-informed decisions about participation.

Therefore, the HPRC consent document was carefully developed over a three-year collaborative effort involving scientific, ethical, legal, and community representatives. Experts from the Mount Sinai recruitment site, HPRC’s Population Sampling and Representation (PSR) and Ethical, Legal, and Social Implications (ELSI) working groups, the Mount Sinai Hospital’s Genomic Stakeholder Board, the Coriell Institute, Indigenous and Tribal policy specialists, and legal professionals iteratively convened to ensure the consent document is clear, ethically sound, and inclusive.

Insights from established open-access genetic programs, including the 1000 Genomes Project and Human Cell Atlas, played a key role in shaping the initial consent development. This process was further guided by frameworks such as the Global Alliance for Genomic Health (GA4GH) policies, the principles of Collective Benefit, Authority to Control, Responsibility, and Ethics (CARE), as well as the Findable, Accessible, Interoperable, and Reusable (FAIR) principles. Finally, language was refined to make it accessible to a general audience, replacing complex scientific terms with clear explanations.