Ciara Staunton

Dr. Ciara Staunton is an internationally recognized expert in the ethical, legal, and social implications (ELSI) of genomics, health data, and emerging technologies. Her research has shaped global, regional, and national policies on data governance, participant-centered research, and public health ethics, with a focus on enabling responsible, equitable, and sustainable health research infrastructures.

Ciara’s expertise in genomics and biobanking governance has led to major international contributions. In 2023, she was appointed by the World Health Organization (WHO) as lead consultant to develop the Principles for Human Genome Data Collection, Access, Use and Sharing. Published in 2024, these principles provide the first global standard for the ethical and equitable use of genomic data, guiding research institutions, policymakers, and public health bodies worldwide. Regionally, she was part of the drafting team for the H3Africa Ethics and Governance Framework for Best Practice in Genomic Research and Biobanking in Africa (2017), the first continent-wide framework for genomic research in Africa, now widely used to inform national regulations and institutional policies.

At the intersection of law, data protection, and health research, Ciara’s work has focused on analyzing the impact of regulations such as the EU General Data Protection Regulation (GDPR) and South Africa’s Protection of Personal Information Act (POPIA) on health data use. Her Wellcome Trust-funded research on genomic data governance in Africa produced recommendations for broad consent under POPIA and led to the development of South Africa’s Code of Conduct for Research (2024) by the Academy of Science of South Africa. She also spearheaded the creation of Country Guides on Cross-Border Data Sharing for twelve African jurisdictions, providing researchers with practical tools to navigate the ethical and legal requirements for international data sharing in health research.

Her research has also directly shaped public health data practices. As a consultant to the South African National Institute for Communicable Diseases (NICD) (2019–2023), she developed guidelines and training for the ethical and lawful use of HIV Result-for-Action reports, balancing patient privacy with the need for effective public health monitoring. She also developed Guidelines on the Collection, Management, and Access of Patient Personal Information for the South African Department of Health, ensuring alignment between public health data use and privacy legislation.

During the COVID-19 pandemic, Ciara authored the Framework for the Governance of Personal Data for the Access to COVID-19 Tools Accelerator (ACT-A), enabling ethical data use in global pandemic responses, and co-drafted the Irish Institute for Public Health’s submission to the Public Health Reform Expert Advisory Group.

Early in her career, Ciara’s legal expertise informed national law reform efforts, including expert advice to the Irish Government on abortion law reform (2013) and to the Kingdom of Bahrain on stem cell regulations (2018).