Gengage Conference Public Engagement with Genetic Medicine University of Strathclyde | 17 June 2009 Peter Finegold, Isinglass Consultancy Ltd

Cartoon: Maya Evans What is the future for genetic medicine?

“…widely diffused benefits to society and the economy in return for according an unusual degree of intellectual autonomy and internal self-governance…” (Harvey Brooks, 1990) Social contract model with science

1.Public perceptions of genetic medicine 2.Communicating risk in relation to breast cancer screening linked to improvements in genetic risk prediction 3.Large cohort genetic association studies and school genetics education

Public perceptions of genetic medicine What role do genes play in influencing health? To what extent are genes responsible for causing heart disease, cancer and mental illness? How receptive would you be to taking a genetic test that would identify illness that might develop in the future? How acceptable would it be for you to take a test that would show whether a particular drug would work for you? Is the UK public ready for genetic medicine? Finegold P, Mathieson K, Holmes L,, Boon M, Cottle M, Donnai, D, Middleton-Price H; Personalized Medicine 5(1), 65–76 (2008)

Public perceptions of genetic medicine Is the UK public ready for genetic medicine? Finegold P, Mathieson K, Holmes L,, Boon M, Cottle M, Donnai, D, Middleton-Price H; Personalized Medicine 5(1), 65–76 (2008) Genetics will identify people at risk of many common diseases 84% Genetics will help patients with cancer survive longer 74% Genetics will identify which medicines work best for you 74% Genetics will result in better treatment for mental illness 68% Genetics will not really impact on health treatments 22% The impact of genetics on healthcare of the next 10 years

Public perceptions of genetic medicine Question 3 Would you consider having a quick and painless test that looks at your genes, if it told you whether a particular drug will work for you? Is the UK public ready for genetic medicine? Finegold P, Mathieson K, Holmes L,, Boon M, Cottle M, Donnai, D, Middleton-Price H; Personalized Medicine 5(1), 65–76 (2008)

Women’s views of breast cancer screening Linked to a £1.2 million programme in Manchester “Improvement in risk prediction, early detection and prevention of breast cancer” (led by Professor Gareth Evans) Women have 1 in 10 lifetime risk of developing breast cancer There are many factors that influence risk, including: -mammographic density -lifestyle and reproductive history -genetic factors Nowgen Forum on 5 December 2008; pilot to explore views of potential ‘personalised’ screening Identifying level of concern if (e.g.) genetically low risk women were screened less frequently

Needles in a DNA-stack… Why is it important for teachers and students to know about genetic association studies? Nature | 29 April 2009Daily Mail | 29 April 2009

Consent Large genome-wide association studies Potential applications… Genetic profiling Personal risks identified Preventive medicine Potential new therapies Personalised treatments Embryo selection Confidentiality Family implications Insurance Access to healthcare Worried well Interpreting risk Public acceptance Health prioritisation

Current curriculum coverage of genetics in England -Single gene inheritance of common genetic diseases -Some dihybrid and polygenic inheritance at A level -One gene - one protein understanding of the role of DNA -Science in Society A-level : nature and nurture -Perspectives on the History and Philosophy of Science: ethics

1.Suite of educational support materials for A-level biology, Perspectives on the history and philosophy of science, Science in Society & GCSE science 2.Three Teachers’ TV programmes (45 mins in total) about the science and educational relevance of large scale cohort genetic studies (1 for GCSE, 1 for CPD, 1 for A-level) 3.Programme of visits to research institutes for A-level students 4.Examiners’ seminar to explore the model for introducing contemporary science 5.Contextualised in an educational research programme Needles in a DNA-stack

Project team and partners Peter FinegoldIsinglass Consultancy/University of Manchester Professor Dian Donnai Central Manchester Foundation NHS Trust Dr Helen Middleton-Price Nowgen Professor Andrew ReadUniversity of Manchester Professor Jane Worthington University of Manchester School of Medicine Angela HallNuffield Curriculum Centre Kate MathiesonNowgen Dr Leah HolmesNowgen Professor John Harris Institute of Science, Ethics and Innovation Dr Anne ScottUniversity of York Science Education Group Dr John TaylorEdexcel Chief Examiner Paul AshtonTeachers’ TV

1.Addressing uncertainty without losing confidence 2.Marrying patient involvement with public engagement practice 3.What experience can traditional clinical genetics bring to genetic medicine 4.How do we ensure that young people and the wider public can engage with the the probabilistic nature of genetic medicine 5.How do we channel the outcomes and outputs of this work into health and science policy.

Gengage Conference Public Engagement with Genetic Medicine Peter Finegold