Personalised medicine and beyond: Supporting a data-driven healthcare system

In Denmark, we are highly committed towards implementing personalised medicine across our healthcare system. We have successfully established a national infrastructure for offering whole genome sequencing in health care and storing these genomic data to be utilized in research. However, precision medicine is more than genetic data. Precision medicine is data-driven medicine.

With this conference we will bring together professional experts e.g. researchers and relevant stakeholders to share knowledge and learn from other great Nordic and European initiatives, nourishing the common ambition of facilitating more efficient and precise treatment by utilising health data in the best possible way.

The conference is aimed at a wide national and international audience working within the area of personalised medicine and data-driven healthcare, including patient organisations, clinicians, researchers, industry representatives, politicians, administrative staff and journalists.

The conference is supported by the Novo Nordisk Foundation. 

We will continuously update this page with new information about the conference. The program will be published here soon as the last details are in place, along with an introduction to the speakers.

Sessions

Session 1

From genomic data to personalised medicine: Where are we and what is the goal?

Personalised medicine is more than genetic data. Personalised medicine is data-driven medicine. Therefore, the purpose of this session is to formulate the overall ambitions and goals for a data-driven healthcare system, and to identify barriers and strategies for the dream scenarios to become true.

Meet the speakers below

  • Department of Molecular Medicine & Department of Oncology, Aarhus University HospitalInstitute of BiomedicinePharmacology & Precision MedicineAarhus University

    Britt Elmedal

    Consultant, Associate Professor

    She is a clinical oncologist and an expert in precision oncology. She is the founder and daily lead of the Oncology Precision Project Aarhus (OPRA), a programme that offers comprehensive genomic profiling to cancer patients to guide the selection of targeted therapies. To advance the field of precision oncology, she emphasises the critical importance of access to data, including genomic data.

  • Rigshospitalet and University of Copenhagen

    Sisse Ostrowski

    Professor, consultant, head of research, head of studies for master program in personalised medicine

    She is an MD and Head of Research for the largest genetic cohort in Denmark. Her work focuses on leveraging genetic and health register data to advance precision healthcare, with a particular research interest in sex differences and inflammation.

  • The Danish Association of the Pharmaceutical Industry (Lif)

    Ida Sofie Jensen

    CEO

    She is the CEO of the Danish Association of the Pharmaceutical Industry. One of the organisation’s strategic goals is to help establish a national strategy for personalised medicine. It also advocates for better use of health data as a key driver of a more effective and efficient healthcare system.

  • The Danish Health Data Authority

    Thomas Fredenslund

    Director General

    He has a background as Director of the Danish Agency for IT and Learning for 12 years and has also headed the Digital Taskforce at the Ministry of Finance. He joined the Danish Health Data Authority in November 2023 and is now also leading the process towards establishing Digital Health Denmark.

  • The Danish Health Data Authority

    Jacob Hartmann Sørensen

    Head of Programme

    He has been working in the cross-field between data and IT in local and central government the last 15 years. Between 2020 and 2025 he was worked as Head of Division in the Danish Agency for IT and Learning. Since April 2025 he has been Head of Programme and responsible for implementing the first step in the Danish vision for better use of healthcare data.

  • NHS England

    Dame Sue Hill

    Professor, Chief Scientific Officer for England & Senior Responsible Officer for Genomics in the NHS

    She leads and directs Genomics in the NHS, driving the worldleading programme to deliver an NHS Genomic Medicine Service, with precision medicine and datadriven healthcare at its core, in partnership with academia, industry, and both UK and international governments and initiatives.

  • Karolinska Institutet

    Richard Rosenquist Brandel

    Professor

    He is a specialist in clinical genetics and Director of Genomic Medicine Sweden, a national infrastructure advancing data-driven personalised medicine. His expertise lies in the application of cutting-edge molecular tools, including multi-omics approaches, to haematological malignancies, with the aim of improving diagnosis, prognosis, and clinical decision-making.

  • Health Data Hub

    Emmanuel Bacry

    Scientific Director

    He holds a PhD in Mathematics and serves as Scientific Director at the HDH, as well as Research Director at the CNRS. An expert in AI and health data, he focuses on applying data science to real-world challenges. Within the HDH, he leads the development of new projects and initiatives aligned with public-interest AI in healthcare and the EHDS.

  • The Social Liberal Party

    Stinus Lindgreen

    Researcher and Member of Parliament

    He has a Ph.D in Bioinformatics from the University of Copenhagen and has worked in research for years both in Denmark and abroad. Currently, he is a member of the Danish Parliament and the spokesperson for, among other things, health, digitalisation and research.

Session 2

Infrastructure requirements, data standards and competencies to support personalised medicine and a data-driven healthcare system

This session focuses on unpacking the practical implications when designing and implementing a true data-driven healthcare system. What are the requirements, barriers and bottlenecks regarding it-infrastructures, data standards and competencies both at a local-, national- and EU-level?

Meet the speakers below

  • RCSI University of Medicine and Health Sciences

    Laura Anne Whelan

    Lecturer in Human Genetics and Genomics, Project Management Lead Genomic Data Infrastructure Ireland and Genome of Ireland

    Dr. Laura Whelan is a lecturer at RCSI University of Medicine and Health Sciences, where she teaches across undergraduate and postgraduate programmes in genetics, genomics, and precision medicine. Alongside her academic role, she plays a key role in the Genomic Data Infrastructure Ireland and Genome of Ireland projects — national initiatives focused on building secure, ethical, and technology-ready infrastructures to support genomic research and healthcare. Her work spans genomics, data science, and emerging technologies, with a focus on translating innovation into improved health outcomes.

  • Queen Mary University of London

    James Buchanan

    Senior Lecturer

    As a health economist, he applies economic methods to quantify the value of precision medicine in health systems. Access to linked genetic, clinical, and sociodemographic data—shared (with consent) across jurisdictions—is fundamental to this work.

  • Herlev and Gentofte University Hospital

    Bodil Ørkild

    Deputy Director

    A cardiologist by training, she is the deputy director at University Hospital at Herlev and Gentofte in Copenhagen. She is also a member of the steering committee for Personalized Medicine and the ATMP group in the Capital Region of Denmark.

  • University of Copenhagen

    Klaus Hoeyer

    Professor

    He is a health services researcher specializing in the implications of data collection and reuse. He believes it is important to understand the social, economic, and political implications of data reuse in order to optimize its potential medical benefits.

  • Statens Serum Institut

    Henrik Ullum

    CEO

    In his previous position, he initiated the Copenhagen Hospital Biobank and the Danish Blood Donor Study—two of the largest Danish genetic data sources. At Statens Serum Institut, the National Danish Biobank and Biobank Register are regarded as key tools for future personalized medicine.

  • Institute for Molecular Medicine Finland FIMM, University of Helsinki

    Aarno Palotie

    Research Director

    He is an internationally recognized geneticist whose expertise lies in uncovering the genetic underpinnings of common diseases. His research lever-ages the unique Finnish population and healthcare system to identify genetic variants and better under-stand disease mechanisms. He is deeply committed to supporting personalized medicine and a data-driven healthcare system, as these approaches enable more precise, individualized treatments and can improve healthcare outcomes across entire populations.

  • PREDICT National Center of Excellence, Aalborg Univer-sity Copenhagen

    Tine Jess

    Center Director

    She is the Director of the PREDICT Center of Excellence, building a state-of-the-art model for combining clinical data, nationwide data, and molecular data to obtain exclusive novel basic science information on the biological mechanisms underlying development and course of inflammatory bowel disease.

  • GA4GH

    Peter Goodhand

    CEO

    His work centers on global genomic and health-related data sharing, with a strong emphasis on interoperability supported by standards and policy. High quality genomic knowledge has the potential to greatly advance personalized medicine, while data-driven healthcare can significantly accelerate progress in genomic research.

  • European Commission

    Saila Rinne

    Head of Artificial Intelligence in Health and Life Sciences

    She is the Head of the Unit “Artificial Intelligence in Health and Life Sciences” at the European Commission, DG CNECT. The unit manages the European 1+ Million Genomes Initiative, as well as the Genomic Data Infrastructure and Genome of Europe projects, funded through the Digital Europe Programme.

  • ELIXIR

    Serena Scollen

    Head of Human Genomics and Translational Data

    She is an expert in human genomics and translational data, driving collaboration across Europe to enable secure, crossborder access to genomics—empowering data-driven personalised medicine and unlocking the full potential of genomic data at scale.

  • Danish National Genome Center

    Troels Tvedegaard Rasmussen

    Senior Adviser

    He works in the life science and compute infrastructure domains both internationally and nationally, with a focus on creating beneficial links between research and healthcare. Connecting these two areas is vital to fulfilling the promise of personalised medicine and data-driven healthcare.

  • Danish Life Science Cluster

    Diana Arsovic Nielsen

    CEO

    With experience in public-private health innovation, she explores how personalized health can be enabled through cross-sector collaboration in a data-driven, digital healthcare system focused on the individual.

Session 3

Exploring ethical and legal perspectives in the development of personalised medicine and a data-driven healthcare system

The design and implementation of a true data-driven healthcare system must be based on a solid legal and ethical foundation. Therefore, the purpose of this session is to explore ethical and legal perspectives in the development of personalised medicine and a data-driven healthcare system in a "data ethical trial" format.

Meet the speakers below

  • University of Copenhagen

    Klaus Hoeyer

    Professor

    He is a health services researcher specializing in the implications of data collection and reuse. He believes it is important to understand the social, economic, and political implications of data reuse in order to optimize its potential medical benefits.

  • The Danish Association of the Pharmaceutical Industry (Lif)

    Ida Sofie Jensen

    CEO

    CEO of the Danish Association of the Pharmaceutical Industry. One of their strategic goals are to achieve a national strategy for personalised medicine. They also work for better use of health data as the key to a better and more efficient healthcare system.

  • Institute for Molecular Medicine Finland FIMM, University of Helsinki

    Aarno Palotie

    Research Director

    He is an internationally recognized geneticist whose expertise lies in uncovering the genetic underpinnings of common diseases. His research lever-ages the unique Finnish population and healthcare system to identify genetic variants and better under-stand disease mechanisms. He is deeply committed to supporting personalized medicine and a data-driven healthcare system, as these approaches enable more precise, individualized treatments and can improve healthcare outcomes across entire populations.

  • National Center for Ethics / Danish Data Ethics Council

    Francisca Nordfalk

    Project manager

    She holds a Ph.D. in Medicine, Culture, and Society, as well as a Master of Public Health. Her work focuses on the values embedded in the utilization of data and technologies in society, exploring the intersection between health data and data ethics.

  • DataEthics.eu

    Gry Hasselbalch

    Academic Director

    She is a scholar in data and AI ethics with two decades of experience in AI, data, and digital policy. A former member of the EU High-Level Expert Group on AI, she has served as a Senior Key Expert in AI diplomacy, a member of a bioethics council on AI and human health, and is the founder of DataEthics.eu. She is also the author of several books on AI and power.

Session 4

Looking forward

For the dream of a true data-driven healthcare system to become true, we must work together, embrace new technologies, make smart investments and prioritize our efforts. Therefore, the purpose of this session is to look into the future of personalised medicine and a data-driven healthcare, and to discuss political priorities and funding possibilities.

Meet the speakers below

  • Children’s Hospital of Eastern Ontario Research Institute

    Dr. Kym Boycott

    Senior Scientist

    She is a Professor of Pediatrics at the University of Ottawa in Canada, where she is a Clinical Geneticist at the Children’s Hospital of Eastern Ontario (CHEO), Chair of the Department of Genetics, a Senior Scientist at the CHEO Research Institute, and holds a Tier 1 Canada Research Chair in Rare Disease Precision Health. She leads the national Care4Rare Canada Consortium, Rare Disease Models and Mechanisms Network, and the All for One Precision Health Initiative, integrating genomic, other –omics, data sharing, and model systems to improve our understanding of rare disease.

  • Movement Health Foundation / CPH Inst Futures Studies

    Bogi Eliasen

    Executive Director / Honorary Fellow

    He initiated FarGen, the first population genome project, and has worked with genomics and data-driven health initiatives for the past 20 years. His roles have included Director of Health at the Copenhagen Institute for Futures Studies and Director of the Movement Health Foundation, where he has been involved in projects such as Nordic Health 2030 and numerous other initiatives around the world.

  • Novo Nordisk Foundation

    Mads Krogsgaard Thomsen

    CEO

Practical Information

What:
Danish National Genome Center Conference 2025

Where:
Radisson Blu Scandinavia Hotel, Amager Boulevard 70, 2300 Copenhagen and online

When:
September 8, 2025, from 8:00 AM to 6:30 PM (CET)

Programme

We are still in the process of confirming all speakers and presentation titles. The programme will be updated continuously leading up to the conference – please check back regularly for the latest version.

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