Senior Specialist Sandra Liede, Ministry of Social Affairs and Health, Finland, at Genomics to Healthcare EU side event, 13 Sept 2019, THL, Helsinki

1. The Finnish Genome Strategy and
the Genome Law
Genomics to Healthcare
Helsinki, Friday 13th September 2019
Sandra Liede, Senior Specialist
Ministry of Social Affairs and Health

2. THE CONSTITUTION OF FINLAND
WHAT:
Finland’s constitution requires that public authorities, in addition to providing health
services for all, promote peoples’ health.
HOW:
This is accomplished by addressing the determinants of health and by reducing risk factors.

3. FINNISH EU PRESIDENCY OF THE COUNCIL OF THE
EUROPEAN UNION
• The Finnish EU Presidency allows Finland greater possibilities for
strategic influencing.
• Focus area of the MSAH: Economy of Wellbeing
• Finland urges EU decision-makers to recognise that wellbeing of people is a prerequisite
for economic growth and social and economic stability. Economic growth also creates
more opportunities to improve people’s wellbeing.
• We need to identify the importance of policies and schemes that promote people’s
wellbeing to achieve sustainable economic growth and stability.
• Crosscutting theme: Digitalisation and utilizing new technologies

4. GLOBAL PERSPECTIVE
SOURCE: INTEGRATING GENOMICS INTO HEALTHCARE: A GLOBAL RESPONSIBILITY (THE AMERICAN JOURNAL OF HUMAN GENETICS 104, 13–20, JANUARY 3,
2019)

6. Declaration on linking genomic databases across borders:
"Towards access to 1 million Genomes in the EU by 2022“
Signed by 20 EU MS and Norway
7 Observer countries:
BE, CH, DE, DK, FR, IE, PL

7. The 1+ Million Genome initiative
• To allow users to search and access the data through a user-friendly and
effective data governance structure building on existing national
and European initiatives.
• To ensure that citizens, researchers and health systems in Europe can benefit
from the full potential of genomics to advance targeted health care
interventions leading to better prevention, early diagnosis
and treatment of diseases

9. PROPOSAL FOR A NATIONAL GENOME STRATEGY (FINLAND
2015)
• Genomic information is widely used in
healthcare.
• People are able to make effective use
of genomic information in their own
lives.
• Finland is an attractive research and
innovation environment for
collaboration and investment in
genomics.

11. Establishing
• National Cancer Centre FICAN
• Genome Centre
• Pharmaceutical
Development Centre
• Neurocentre
• Enhancing the joint activities of the biobanks
Finnish government is investing over 30 million
euros for personalized medicine research,
innovation, education and data management
centres of excellence.
CENTRES OF EXCELLENCE
- Highest-class knowhow, research and education

12. AIMS OF THE FINNISH GENOME ACT
• support the responsible, equal and secure use of genomic data for the
benefit of wellbeing and health.
• establish the Genome Centre - a centre of excellence
• establish a national centralized genomic database
• support the use of genomic data for health care and research purposes
• regulate genetic testing
• The proposed law is intended to come into force in 2020.

13. GENOME CENTRE – IMPLEMENTATION STATUS
• DRAFT GOVERNMENT BILL – PUBLIC CONSULTATION (2. ROUND) DURING SUMMER 2019
• TASKS OF THE GENOME CENTRE HAVE BEEN DEFINED AND WILL BE FURTHER ELABORATED DURING THE
NEXT FEW MONTHS
• PLANNING AND DEVELOPMENT OF OPERATIONS AND ICT ARCHITECTURE
• ENGAGING THE POLITICAL DECISION MAKERS, ALL STAKEHOLDERS AND THE PUBLIC

14. NEXT STEPS FOR EUROPEAN POLICY-MAKING: GENOMICS
POLICY BRIEF
• The Observatory is a partnership, hosted by WHO/Europe.
• The Observatory supports and promotes evidence-based health policy-making through
comprehensive and rigorous analysis of the dynamics of health care systems in Europe.
• It engages directly with policy-makers and experts, and works in partnership with research
centres, governments and international organizations to analyse health systems and policy
trends.
• Other international organizations
• the European Commission
• the World Bank
• national and regional governments (Austria, Belgium, Finland, Ireland, Norway, Slovenia,
Spain, Sweden, Switzerland, the United Kingdom and the Veneto Region of Italy)
• other health system organizations
• academia (the London School of Economics and Political Science (LSE) and the London
School of Hygiene & Tropical Medicine (LSHTM)).

15. PERSONALIZED MEDICINE EU PRESIDENCY EVENT,
BRUSSELS 10th October 2019
The Genomics Policy Brief is a small report tailored to the needs of health policy makers for
informing them about available evidence on genomics in healthcare.
It focuses on policy relevance and implementation of policy options.
The draft genomics policy brief will be presented in Brussels during the Finnish EU Presidency
event on Personalized Medicine 10th October 2019.
Take home message:
Integrating genomics into healthcare is a joint venture of different sectors and stakeholders,
authorities, researchers, companies and citizens.

16. THANK YOU!
Sandra Liede
Sandra.liede@stm.fi