Roundtable Discussion: Data Citizenship - Who Owns Your Genome?
Everyone is invited to this interactive discussion to share perspectives and challenge assumptions.
Step into a thought-provoking roundtable exploring one of the biggest questions in modern genomics: Who really owns your genome?
Participants will discuss the complexities of data citizenship, from ownership and access to what makes a project ethically and practically suitable.
Roundtable Leaders
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Stephan Beck
Emeritus Professor of Medical Genomics | Director
UCL Cancer Institute | Personal Genome Project UK
Topics for discussion
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Consent vs. control: What does meaningful consent look like in long-term genomic research, where data reuse is common.
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Data access and sharing: Who should have access and under what conditions.
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Equity and representation: How do ownership models impact underrepresented populations and global diversity?
Who should attend
- Researchers and clinical scientists working with genomic data.
- Bioethicists, ELSI specialists, and ethics committee members.
- Policy, regulatory, and data governance professionals.
- Patient advocates and public engagement specialists.
- Legal professionals interested in IP, data rights and consent frameworks.
- Anyone interested in the future of genomic data ownership, access and equity.
Roundtable format
- This roundtable is led by four expert facilitators who will guide an open, interactive discussion rather than a formal presentation.
- Participants will sit together in a small-group setting, exploring each topic collaboratively, with the experts prompting debate, posing questions, and helping the group unpack real-world scenarios.
- Expect an inclusive, conversational format where everyone’s voice is encouraged and the session evolves based on the ideas brought to the table.