the-BA : SPA March 2008 release

For Immediate Release
18 March 2008

Members of the public have a number of significant concerns about personalised medicine, warn Elisa Pieri and Professor Brian Wynne of the ESRC Centre for Economic and Social Aspects of Genomics (CESAGen), but so far policy makers have not tried to understand these concerns as reasonable conditions rather than as intransigent opposition or private fear.

The outcomes of a North West Genetics Knowledge Park (Nowgen)-funded project conducted at CESAGen to explore public views and priorities on personalised medicine, are described in this month’s issue of Science and Public Affairs.

Pieri and Wynne say if policy makers try to understand public concerns as reasonable conditions, in some cases it may be impossible to fulfil them, ‘in which case the innovation, and perhaps the related science, will rightly be in jeopardy’. They conclude: ‘If policy makers were to take these concerns seriously and meet them with regulatory systems that address technology’s social constitutions and alternatives rather than simply deal with post-innovation questions of risk, we may usher in a more intelligent and democratic approach to such science-intensive innovation.’

Personalised medicine, also known as pharmacogenetics, is the study of how genetic variations affect an individual’s response to medicine, and requires the use of genetic testing to prescribe and develop drugs. There has been a large investment in clinical trials, with a view to validating pharmacogenetics and evaluating its cost-effectiveness within the NHS in areas as diverse as treatment of HIV, epilepsy, liver disease and oncology.

’The discourse around pharmacogenetics emphasises the individual. It has connotations of opportunities, quality and effectiveness of care, as well as notions of choice and preferences. Few of these promises have yet materialised, but they are given material power through huge R&D and trial investments, whose opportunity and costs are ambiguously public and private,’ write Pieri and Wynne.

The CESAGen study elicited the views of traditionally ‘hard-to-reach’ sections of the public – senior citizens, young people and parents of young children – and also of citizens of various ethnic heritage in the north west of England through a series of 14 focus groups.

Various strong concerns were highlighted by participants, including: problems with acting on genetic, probabilistic information, as other (often socio-economic) factors would play a role in determining specific risks, and in whether certain lifestyle and treatment changes could be taken up by individuals; concerns about burdensome levels of responsibility; concerns about groups such as insurers and even employers having access to this genetic information, and how this might affect citizens’ access to key services in the future; and the potential for stigma. Equal access, treatment of data, social justice, trust and healthcare priorities were also considered potential issues.

ENDS

For further information or copies of the latest edition of Science & Public Affairs, please contact:

Lisa Hendry, Press Officer, the BA
Tel: 020 7019 4946
Email: lisa.hendry@the-ba.net

For further information about the CESAGen study, please email:

Elisa Pieri, Research Associate, ESRC Centre for Economic and Social Aspects of Genomics (CESAGen)
Email: e.pieri@lancaster.ac.uk

Notes for editors

PLEASE MENTION SCIENCE & PUBLIC AFFAIRS AS THE SOURCE OF ALL THESE ITEMS AND, IF PUBLISHING ONLINE, PLEASE CARRY A HYPERLINK TO: http://www.the-ba.net/spa

1. Science & Public Affairs is a quarterly magazine published by the BA (British Association for the Advancement of Science). By joining the BA's network of supporters, you can receive Science & Public Affairs and be kept up to date on all the latest news from the world of science and society. Alternatively, organisations can subscribe and receive copies for their office or library. For more information and to read the latest edition published online, visit www.the-ba.net/spa.

2. The BA (British Association for the Advancement of Science) exists to advance the understanding, accessibility and accountability of the sciences and engineering. This means helping create a social climate in which science, and the organisations dependent on it, advances with the involvement and active support of non-scientists. We aim to promote openness about science in society and to affirm science as a prime cultural force by engaging and inspiring adults and young people directly with science and technology, and their implications. For more information about the BA, please visit www.the-ba.net.

3. Also in the latest edition:

Cover Story

‘Where to for science and society?’
- Alan Irwin, Dean of Research at the Copenhagen Business School, comments on Ian Pearson’s vision
SPATalk

‘Should the UK limit flying for the sake of climate change?’
- Joss Garman, of Plane Stupid, disagrees with Michelle di Leo, Director of Flying Matters
Opinion

‘A transatlantic perspective on public engagement with science’
- Let’s understand other cultures, pleads John Durant, Director of the MIT Museum
Argument

‘Has public consultation improved the Climate Change Bill’
- Robert Watson, Chief Scientific Advisor to the Department for Environment, Food and Rural Affairs, thinks it has
- Campaigners’ advice ‘largely unheeded’, says Caroline Lucas, Green member of the European Parliament for South-East England

‘Future planning and participation’
Will the Planning Bill mean that the public has much less say in the development of major infrastructure such as airports and nuclear power stations?
- The Department for Communities and Local Government say it will be easier for the public to be involved
- Decisions will be made by an unaccountable body, says Naomi Luhde-Thompson, Planning Coordinator at Friends of the Earth
Exchange

‘Beacons for public engagement’
- Plans for the new initiative
Sounding Off

‘More power to the people?’
- Nigel Eady, Science in Society Officer at the BA is not convinced
Brownie Points

‘Communication theories lack inspiration’
- What works is work, asserts Tracey Brown, Director of Sense About Science
SET in Parliament

‘Select committees reward loyalty, not skills’
- Ian Gibson, MP for Norwich North, wants to shake politicians
Features

‘Blazing a trail for public engagement’
- Andrea Cornwall looks to the Beacons

‘Scientists and the public need to engage directly’
- Vanessa Spedding hears from the BA’s new President, David King

‘All opinions welcome’
- David Lerner on the future of the Don

‘Encouraging biologists to think’
- Brian Rappert describes a new experiment

‘Science centres under threat’
- Penny Fidler lays out the options

‘Europeans split on science in the media’
- Antonia Mochan relates Eurobarometer’s findings

‘Where’s my personal information going?’
- Adam Joinson on privacy and public trust in government

‘Patently ridiculous’
- Alice Tuff and Frank Swain expose ‘science’ in advertising

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