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  • 1.
    Joint Nordic Registers and Biobanks: A goldmine for health and welfare research2014Rapport (Övrig (populärvetenskap, debatt, mm))
    Abstract [en]

    This report is based on the work of the NORIA-net on Registers and Biobanks (NRB), a Nordic working group of key actors involved in Nordic research and research policy at the national level. This NORIA-net has focused its activities on how to overcome existing obstacles that impede Nordic data sharing and has proposed ways of enhancing coordination to strengthen Nordic register-based research.

    Register-based research within the field of health and wellbeing has great potential for producing knowledge that can be used to improve the capacity of the Nordic welfare states.

    Nordic register-based research has the potential to attract international interest and to enable the Nordic research community to take the international lead in this field.

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  • 2.
    Legislation on biotechnology in the Nordic countries: – an overview 20162016Övrigt (Övrig (populärvetenskap, debatt, mm))
    Abstract [en]

    The current report is an update of the reports on Legislation onbiotechnology in the Nordic countries published in 2014 and 2015. Given the clear need for such overviews, the Nordic Committee on Bioethics decided to update the tables to reflect recent legal amendments. The aim of this report is to give the reader information on the current status in the different countries and a chance to compare the legal situation.

    Sixteen important areas of biotechnology have been chosen for this overview:

    • Assisted reproduction
    • Preimplantation genetic diagnosis (PGD)
    • Preimplantation genetic screening (PGS)
    • Abortion• Prenatal Diagnosis and/or screening
    • Organ and tissue transplantation
    • Embryo research
    • Cloning
    • Clinical research on humans
    • Human biobanks
    • Ethical committees
    • Genetic testing
    • Advanced therapy medicinal products
    • Genetically modified organisms
    • Animal experimentation
    • Legal status of Council of Europe Biomedicine Conventionand its additional protocols
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  • 3.
    Legislation on biotechnology in the Nordic countries: – an overview 20172017Övrigt (Övrig (populärvetenskap, debatt, mm))
    Abstract [en]

    The current report is an update of the reports on Legislation on biotechnology in the Nordic countries published annually since 2014. Given the clear need for such overviews, the Nordic Committee on Bioethics decided to update the tables to reflect recent legal amendments. The aim of this report is to give the reader information on the current status in the different countries and a chance to compare the legal situation.

    Sixteen important areas of biotechnology have been chosen for this overview:

    • Assisted reproduction
    • Preimplantation genetic diagnosis (PGD)
    • Preimplantation genetic screening (PGS)
    • Abortion
    • Prenatal Diagnosis and/or screening
    • Organ and tissue transplantation
    • Embryo research
    • Cloning
    • Clinical research on humans
    • Human biobanks
    • Ethical committees
    • Genetic testing
    • Advanced therapy medicinal products
    • Genetically modified organisms
    • Animal experimentation
    • Legal status of Council of Europe Biomedicine Convention and its additional protocols
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  • 4.
    Palmgren, Juni (Redaktör)
    Karolinska Institutet.
    Nordic biobanks and registers: A basis for innovative research on health and welfare2017Rapport (Övrig (populärvetenskap, debatt, mm))
    Abstract [en]

    The report describes a knowledge base for cross-border development of research that uses Nordic registers, biobanks and clinical studies, and offers suggestions for policy implications. Separate reports are provided on the Nordic Trial Alliance (NTA), the Nordic eScience Action Plan 2.0 and Open Access to research data from a Nordic perspective.

    This report focuses on registers and biobanks as research infrastructures for innovative research on health and welfare. The Nordic countries have very similar and unique healthcare and welfare systems. The personal identification number (PIN) for each citizen makes it possible to carry out longitudinal research and research based on a combination of health registers (e.g. healthcare data, biobanks, register on the prevalence of different diseases and causes of death) and social registers (e.g. education, employment, migration, gender representation in democratic decision-making). In contrast to the rest of the world, the Nordic countries have very long time series at the population level, considered to be a unique “goldmine” for research. The proposed longitudinal data infrastructure is particularly well suited to studying changes in the Nordic welfare model over time and for setting up a unique basis for personalised medicine/precision medicine that could guide medical practice in real time, including social and behavioural aspects.

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