Sitra Genome Strategy

1. National Genome Strategy
Using genome data to improve
human health
Hanasaari 12 January 2015

2. • Drawing up the genome strategy
• Proposed vision for the genome strategy
• Proposed goals and actions for the genome strategy
• Enabling goals
• Key goals
• Key observations about the goals and actions
Proposed goals and actions for the genome strategy
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Content

3. • Drawing up the genome strategy
• Proposed vision for the genome strategy
• Proposed goals and actions for the genome strategy
• Enabling goals
• Key goals
• Key observations about the goals and actions
Proposed goals and actions for the genome strategy
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Content

4. 4
Drawing up the genome strategy
• On 12 August 2014, the Ministry of Social Affairs and Health (MSAH)
established a working group to draw up a national genome strategy
• The working group’s term of office is 1 September 2014 to 30 April 2015
• The working group is responsible for drawing up a national genome
strategy, while the health division of the Advisory Board on Biotechnology
serves as an advisory body
• MSAH is working together with Sitra on the formulation of the strategy
• The secretariat of the working group has been responsible for the practical
implementation of the strategy work
• In addition, Sitra surveyed the public’s and doctors’ attitudes on genetic
testing in December 2013
The working group

5. 5
Drawing up the genome strategy
• A total of six workshops were organised for stakeholders during the strategy
formulation process
• Kick-off: who owns genome data?
• Genomic research as part of healthcare
• The ethics of genomics
• Genome data impact on healthcare
• How do information systems facilitate the use of genome data?
• Innovations and business in genomics
• More than 100 people participated in the workshops
• The participants included representatives of patient associations, healthcare
professionals, researchers, ethicists, lawyers and representatives of
companies
• The workshops produced input for use in formulating the strategic goals and
for general background material for the strategy work
The workshops

6. • Drawing up the genome strategy
• Proposed vision for the genome strategy
• Proposed goals and actions for the genome strategy
• Enabling goals
• Key goals
• Key observations about the goals and actions
Proposed goals and actions for the genome strategy
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Content

7. In 2020, efficient use will be made of genome data in fostering
human health
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National Genome Strategy 2020
Vision

8. • Drawing up the genome strategy
• Proposed vision for the genome strategy
• Proposed goals and actions for the genome strategy
• Enabling goals
• Key goals
• Key observations about the goals and actions
Proposed goals and actions for the genome strategy
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Content

9. The strategic goals
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Ethical principles and legislation will govern the responsible use of genome data
Healthcare personnel will be well
placed to use genome data
Finland will have information systems in
place for making efficient use of
genome data
Genomic research will be deeply integrated into healthcare operations
Genome data will be
widely used in healthcare
through a model based
on individual and
population needs
Individuals will be able to
make use of genome
data in their own lives
Finland will be an
internationally desirable
research and business
environment in the field
of genomics
Key goals
Enabling goals

10. Ethical principles and legislation will govern the responsible
use of genome data
• Develop and validate ethical principles for the use of genome data, and
identify the values guiding the work of professionals
• Assess the need for legislative changes and make the necessary preparations
• Examples: prohibition of discrimination, legal status of genetic tests pertaining to insurance,
the right to know or not know, data security, equality, protection of privacy, right to high-quality
healthcare services, genetic testing in working life and within the public sector
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11. Genomic research will be deeply integrated into healthcare
operations
• Create a national reference and variation database
• Plan and implement a routine method for collecting consent for genomic research in
connection with public healthcare visits that takes human rights into account
• Create a procedure for evaluating which incidental findings of genomic research will be
communicated to an individual
• Agree on the procedure for communicating incidental findings of genomic research to an
individual
• Find out what is required for making use of information obtained through
genomic research in healthcare and act on the basis of the results
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12. Healthcare personnel will be well placed to use genome data
• Bring the teaching of genomics included in the basic training and
specialisation studies of healthcare professionals up to date
• Incorporate the teaching of genomics by mainstreaming it to all the clinical skills courses
included in the basic training of doctors
• Develop and implement a training programme for doctors and other healthcare
professionals who have already started their working lives
• Develop a communications programme for healthcare professionals regarding the
communication of genome data to health service users
• Conduct a needs-based assessment concerning the training of a new group of
professionals, genetic counsellors, and other professionals in the field of
genomics, and initiate the training, if so required by the assessment results
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13. Finland will have information systems in place for making
efficient use of genome data
• Develop a holistic architecture for genome data
• Create a national platform that provides a flexible way of bringing together healthcare and
research data, and data from biobanks
• Set the national standards required for guiding the recording, transmission and use of genome
data
• Introduce a well-being and healthcare data management platform for personal use that
enables individuals to record and make use of genome data
• Establish connections to the necessary international databases
• Draw up national data security and data protection guidelines
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14. • Promote the use of genetic risk profiling in the prevention of diseases
• Ensure that sufficient genetic testing is conducted on patients to determine the
cause of the disease and that the results also benefit family members and
other relatives
• Develop a procedure for the systematic evaluation of genetic tests while
taking account of international recommendations (clinical validity and utility)
• Draw up and update the guidelines for the use of genome data in the
prevention and treatment of diseases (indicators for ordering tests, customer
guidance, information services)
• Provide doctors with a clinical decision-making support tool based on genome
data
• Analyse the costs and benefits of making use of genome data
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Genome data will be widely used in healthcare through a
model based on individual and population needs

15. Individuals will be able to make use of genome data in their
own lives
• Provide the capacity to use genome data by incorporating it into the teaching
in secondary schools and in secondary education
• Have healthcare professionals provide health service users with information
on how to use genome data to foster their own health
• Develop a service path and guidelines for individuals on what type of genetic
tests are available and where and how, and also what type of genome
interpretation services and information related to genetic tests is on offer
• Provide individuals with access to genome data tools (e.g. through a citizens’
portal)
• Provide individuals with instructions on how to use genome data in fostering personal health
and decision-making support tools
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16. Finland will be an internationally desirable research and
business environment in the field of genomics
• Develop a national service point for companies and research organisations
that offers services related to research, agreement and commercialisation
matters in a centralised manner. A service point based on the one-stop shop
principle also serves as a co-ordination body for international co-operation
projects
• Develop a national operating model for co-operation between the public and
private sector that enables making use of genome data, and the health
information linked to it, in research and product development projects
• Provide access to genome data and health information compiled from the data
sources of various organisations for use in research and development
activities
• Establish a funding, productisation and commercialisation programme for
stimulating applications and products developed on the basis of genomic
research
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17. Key observations about the goals and actions
• Need to make efficient use of genome data and other health information and prevent
them from becoming fragmented
• Need for a national-level operator with the ability to co-ordinate and steer work at a
national level, and provide a one-stop service point for issues concerning genomics
• The next stage will involve concrete proposals, allocation of responsibilities and setting
a timeline for making the goals a reality
• Founding a genome centre
• To handle the practical implementation of the genome strategy
• To offer services related to research, agreement and commercialisation matters in a centralised manner
• To make the ethical procedures more uniform and efficient
• To develop a national reference and variation database
• To promote networking and co-operation between parties in the field of genomics
• To facilitate Finland’s participation in international co-operation projects
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