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Genome strategy slideshare

Sitra Genome Strategy

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Genome strategy slideshare

  1. 1. National Genome Strategy Using genome data to improve human health Hanasaari 12 January 2015
  2. 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 2 Content
  3. 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 3 Content
  4. 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. 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. 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 6 Content
  7. 7. In 2020, efficient use will be made of genome data in fostering human health 7 National Genome Strategy 2020 Vision
  8. 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 8 Content
  9. 9. The strategic goals 9 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. 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 10
  11. 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 11
  12. 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 12
  13. 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 13
  14. 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 14 Genome data will be widely used in healthcare through a model based on individual and population needs
  15. 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 15
  16. 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 16
  17. 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 17

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