Wednesday 27 January 2027 | 14:30 - 16:00 | Genome Dome

Genomic and health data are becoming some of the most valuable resources in modern medicine - enabling discoveries that could transform diagnosis, prevention and treatment. However, the future of data-driven healthcare depends on one essential ingredient: public trust. 

Recent concerns around biobank data security have raised important questions about how genomic information is protected, who should have access, and how participants’ expectations are reflected in decisions about data use. This discussion will bring together data custodians, researchers and participants to explore what responsible genomic data sharing should look like in practice. 

Trust in Data Age

Learning outcomes

  • Understand the ethical, governance and security principles that underpin responsible access to genomic and health data.  

  • Identify strategies for maintaining confidence in genomic data sharing, including effective responses to data breaches and ensuring participants and communities benefit from research outcomes. 

  • Examine practical approaches to balancing data accessibility for research with privacy, security and evolving participant expectations.  

  • Explore how consent models, transparency and participant engagement can strengthen public trust in large-scale genomic research.  

Who should attend

  • Anyone interested in genomic data, sharing, privacy and safety should attend.

Session outline

  • How do we protect genomic data as it becomes increasingly valuable and interconnected?  

  • How do we ensure that individuals and communities who contribute genomic data see meaningful benefits from resulting discoveries? 

  • How do we maintain trust when data breaches or concerns occur? 

  • What do participants want to know about how their data is being used?  

  • Are current consent and governance models sufficient for the future of genomic medicine?  

  • How can we balance open research access with privacy, security and participant expectations?  

  • What principles should determine who can access large-scale genomic datasets?  

Roundtable Host

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Speaker profile image for Fiona Maleady-Crowe

Fiona Maleady-Crowe

Chief Compliance and Integrity Officer
Our Future Health