Arendal Panel debate: It's Written in the Genes

Our genes contain information with enormous potential for medical research, personalised treatment, disease prevention and public health. Genetic data are changing how we detect, understand and treat disease. In Norway, as elsewhere, research and healthcare are generating ever larger volumes of genomic data from biobanks, clinical sequencing and population studies. The ability to harness these data for the public good depends on a well-developed strategy and systems to store, access and share them securely, efficiently, and ethically.

European initiatives such as ‘1 + Million Genomes’ and the European Health Data Space (EHDS) will make genetic information available for research and healthcare across sectors and borders. Norway currently lacks a coordinated national infrastructure for sharing genomic data across sectors and institutions.

• How can we ensure legal, technical and ethical safeguards while enabling cross-sectoral use of data for healthcare, research and innovation?
• What can we learn from other countries, and how can Norway contribute to - and benefit from - European cooperation?
• How do we ensure that such pan‑European initiatives benefit both patients and research?

In this panel debate, we invite representatives from research, healthcare, government and the field of ethics to discuss how to build trust, infrastructure and expertise for sharing genomic data, nationally and internationally, for the benefit of patients, research and society at large.

See the recorded panel debate

Panelists:

Eivind Hovig - Co‑lead, ELIXIR Norway; PI, Oslo University Hospital (ELIXIR Norway)

Sushma Nagaraja Grellscheid - Head, ELIXIR Norway

Sigrid Bratlie - Strategic Adviser, The Norwegian Cancer Society

Iselin Holmedal Marstrander - Project Manager, The Brain Tumour Association (Moderator)

Silvija Seres - Mathematician and technology investor

Hege Edvardsen - Board leder, CONNECT