Download Needles in a DNA-stack - ESRC Genomics Network

Public Engagement with
Genetic Medicine
Gengage Conference
University of Strathclyde | 17 June 2009
Peter Finegold, Isinglass Consultancy Ltd
What is the future for genetic
medicine?
Cartoon: Maya Evans
Social contract model with science
“…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)
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
The impact of genetics on healthcare of the next 10 years
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%
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
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 2009
Daily Mail | 29 April 2009
Worried well
Interpreting risk
Confidentiality
Family implications
Large genome-wide
association studies
Consent
Public acceptance
Potential applications…
Genetic profiling
Personal risks identified
Preventive medicine
Potential new therapies
Personalised treatments
Embryo selection
Insurance
Access to healthcare
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
Needles in a DNA-stack
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
Project team and partners
Peter Finegold
Professor Dian Donnai
Dr Helen Middleton-Price
Professor Andrew Read
Professor Jane Worthington
Angela Hall
Kate Mathieson
Dr Leah Holmes
Professor John Harris
Dr Anne Scott
Dr John Taylor
Paul Ashton
Isinglass Consultancy/University of Manchester
Central Manchester Foundation NHS Trust
Nowgen
University of Manchester
University of Manchester School of Medicine
Nuffield Curriculum Centre
Nowgen
Nowgen
Institute of Science, Ethics and Innovation
University of York Science Education Group
Edexcel Chief Examiner
Teachers’ 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.
Public Engagement with
Genetic Medicine
Gengage Conference
Peter Finegold
[email protected]
www.nowgen.org.uk