A public health viewpoint

1. A public health viewpoint European Symposium of Genetic Education for Non-genetic health professionals Prague Hilary Burton 6th May 2005

2. Outline • The Human Genome Project and population health • A vision for public health genetics • Experience on education in UK • The future

3. The promise of the Human Genome Project • Greater understanding of disease mechanisms • New approaches to prevention through understanding gene-environment interaction • New means of categorising, diagnosing and treating disease

4. Interaction between genome-based sciences and society • Ethical, legal and social implications require integration of scientific and technological advances with understanding from life sciences, humanities and social sciences

5. The Bellagio initiative: April 2005 • Expert meeting funded by Rockefeller Foundation • Vision and scope of public health genetics agreed • International network launched (GRAPH Int)

6. Society Knowledge Generation Communication and Stakeholder Engagement Population Sciences Informing Public Policy Knowledge Integration Within And Across Disciplines Improvement in Population Health Strategy Genome-based Science and Technology Action Analysis Evaluation Developing and Evaluating Health Services Humanities and Social Sciences Education and Training Research

7. The activity that we call knowledge integration is the driving force or ‘engine house’ of the enterprise It is the process of selecting, storing, collating, analysing, integrating and disseminating information both within and across disciplines for the benefit of population health and includes methodological development It is the means by which information is transformed into knowledge Interdisciplinarity is a key feature Knowledge Integration

8. Education and Training • Genetic literacy for health professionals • Specific training of public health specialists • Educational materials • Courses, workshops and seminars • Informing Public Policy • Legal, philosophical and social analysis • Regulatory frameworks • Engagement in the policy process • Promoting relevant research • International comparisons • Working with governments • Developing and Evaluating Health Services • Includes both preventive and clinical services • Strategic planning • Service organisation, manpower planning and capacity building • Service review and evaluation • Guideline development • Communication and Stakeholder Engagement • General genetic literacy • Public engagement • Marketing the enterprise • Engaging with industry Activities of the Enterprise

9. What is special about public health genetics? The challenge and the opportunity • Brings many disciplines together • Synthesises knowledge • Promotes change though influencing many other systems

10. Public health genetics education • Developing a competency framework for public health genetics • Development of foundation level education • Genetics and health policy course • Development of special placements • Educational resources

11. Knowledge Base Genetic Science Public Health Science Humanities and Social Science Public Policy Technical Skills Health Needs Assessment Programme Planning Data Analysis Review and Evaluation Management Financial Planning Professional Competence THE SCIENCE PROFESSIONAL COMPETENCE IN PUBLIC HEALTH GENETICS Interpersonal Skills Personal Development THE ART Political Sensitivity Ethnicity Cultural differences

12. Knowledge base GENETIC SCIENCE POPULATION SCIENCES HUMANITIES • Epidemiology • Biostatistics • Environmental health sciences • Infectious diseases • Social and behavioural sciences • Health economics • Health services research • Management science • Information science • Sociology • Anthropology • Law • Economics • Ethics • Metaphysics and epistemology • Theology • Political philosophy • Basic concepts of mendelian genetics • Family histories and pedigrees • Risk assessment and communication • Principles of genetic epidemiology • Principles of molecular genetics • Genetic testing and screening • Genetics of common disorders • Gene-environment interaction

13. Competencies in public health genetics • Basic science • Human genome epidemiology • Service delivery and organisation • Genetic tests and their evaluation • Public health policy • Ethical, legal and social implications of genetic advances

14. Experience in public health genetics education Foundation: University of Cambridge courses • Medical undergraduate teaching • Masters of Studies in Public Health • Master of Philosophy in Epidemiology Access to these courses relies on our own specific local connections

15. Seminar structures Presentations, group-work and discussion • Presentation on genes and disease and gene-environment interaction • Basic science, variation and genetic testing • Worked public health example on genetic factors in common diseases and policy development • Introduction to evaluation of genetic tests • Session on regulation and policy • Future case scenario looking at ethical, legal and social implications of genetic testing for common chronic diseases • Questions and discussion

16. Specialist level: Courses Genetics and health policy A five-day intensive course for health sector leaders and policy makers Stem cells: the research and policy agenda (new for 2004) A two-day course exploring the clinical and societal impact of stem cell therapy

17. Specialist registrar programme • Six month attachment to PHGU • A 4 week clinical attachment • Two day attachment to molecular genetics and cytogenetics laboratories

18. The future for specialist training at PHGU Our aim – to have specialists in public health genetics for each health region (about 4 million population) • Three places as specialist location within Eastern Region Public Health Training scheme • Short and longer placements • Some placements for consultants wanting to become specialists

19. Educational resources • Websites • Newsletter • Textbook and other materials

20. Resources: our websites PHGU website www.phgu.org.uk  A "one-stop shop" for news and information about advances in genetic science and their implications for health care and society- links to education CMGP website   www.cmgp.org.uk • Highlighting academic work within the Cambridge region on the ethical, legal and social implications of genetics CGKP website www.cgkp.org.uk • Building awareness of the activities of key individuals and organisations in the wider Knowledge Park community

21. Dissemination: our newsletter CGKP Newsletter: Three times a year, informing funders and stakeholders about our progress and plans Genetics Policy Matters: A 4-page newsletter insert containing a digest of recent policy news Genetics News: A monthly e-mail bulletin from the PHGU website

22. Textbook on public health genetics • Key text to be published during 2005 • Further educational materials and courses to be developed using this content

23. Conclusions • Very low level of awareness – need to engage professional faculties • Need to define competencies for different levels and disciplines and develop appropriate resources for all • Need to develop • Cascade learning • Develop distance learning • Build critical mass of teachers • International networks (GRAPH Int) and in Europe will provide valuable resource