About

The Nordic Alliance for Clinical Genomics (NACG) is an independent, non-governmental, not-for-profit Nordic association.

NACG partners work together and learn from each other to lift performance standards. We aim at responsible sharing of trustworthy data for improved diagnosis and treatment, and as a resource for research.

Goals and activities

NACG aims to

  • Facilitate the responsible sharing of genomic data, bioinformatics tools, sequencing methods and best practices for interpretation of genomic data.
  • Enhance quality of genomic data and processes, and explore methodologies to provide assurance.
  • Understand legal barriers to the implementation of personalised medicine and to engage with key stakeholders that influence these barriers
  • Develop demonstration projects that challenge perceived legal barriers that limit responsible and ethical sharing of genomic and health data.
  • Build bridges between research and clinical communities, technologies and practices to foster innovation

Founding principles

  • Respect for individuals who contribute their personal data for the advancement of human health;
  • Collaboration to share data and information to advance human health;
  • Innovation to develop an environment that accelerates progress;
  • Accountability, developing and demonstrating adherence to best practices in clinical diagnostics, sequencing technologies and ethics;
  • Inclusivity by partnering and building trust among Nordic and International stakeholders.

Roles and responsibilities

NACG is governed by the Steering Committee supported by the Secretariat. Work processes and topics are organised by the Working group leaders.

Steering Committee

Dag Undlien
SC Chair
Department of Medical Genetics, Oslo University Hospital
Norway

Morten Dunø
SC Vice Chair
Department of Clinical Genetics, Rigshospitalet
Denmark

Valtteri Wirta
SC Vice Chair
SciLifeLab
Sweden

Jón Jóhannes Jónsson
SC Member
Department of Genetics and Molecular Medicine, Landspitali - The National University Hospital of Iceland/ Department of Biochemistry and Molecular Biology, Faculty of Medicine, University of Iceland
Iceland

Stephen McAdam
SC Member
DNV
Norway

Janna Saarela
SC Member
FIMM
Finland

Ane Yde Schmidt
SC Member
Center for Genomic Medicine, Rigshospitalet
Denmark

Kasper Thorsen
SC Member
Danish National Genome Center
Denmark

Katharina Ó Cathaoir
SC Member, representative for PerMedLaw
Faculty of Law, University of Copenhagen
Denmark

Director of Secretariat

Bobbie N. Ray-Sannerud
Director of Secretariat
DNV
Norway

Work stream leaders

Sharmini Alagaratnam
Benchmarking, harmonization and Standardization
DNV
Norway

Kaisa Kettunen
Benchmarking, harmonization and standardization
Helsinki University Hospital & FIMM
Finland

Tony Håndstad
Bioinformatic tools development
Oslo University Hospital AMG
Norway

Oleg Agafonov
Structural variants
DNV
Norway

Cathrine Høgseth Nordhus
Preparing for IVDR
Department of Medical Genetics, Oslo University Hospital
Norway


How we work

The NACG community comes together in workshops twice per year to share experiences and address challenges in hands-on activities.

Members present and explore topics of interest to identify shared challenges and discuss strategies for overcoming them. Prioritized topics are explored in in-depth interactive exercises. Findings and learnings are summarized in workshop summary reports and collaborative papers, and contribute to lifting performance standards.

A broader NACG symposium is arranged every second year to broaden the view and engage with a larger community.