Ordinary people worry about the extra, and often burdensome, responsibilities which could come with scientists’ promises of ‘personalised medicine’, according to evidence to be presented at a major two-day showcase of groundbreaking social science research into the whole field of genomics, funded by the Economic and Social Research Council (ESRC).
The event - ‘Genomics and Society: Today’s Answers, Tomorrow’s Questions’ – is taking place in London on Thursday 25 and Friday 26 October 2007. This landmark gathering brings together policymakers, researchers and natural scientists with what is becoming the world’s largest concentration of social scientific research in this field - the ESRC Genomics Network (EGN) (See Notes for Editors).
Topics as diverse as plant and animal genetics, embryonic stem cell research, genetic databases, and the potential for huge advances in medicine, physical health and psychiatry are on the agenda. Regulation and ethics are also key focuses of attention, including research highlighting challenges faced by policymakers seeking to balance animal welfare against scientific productivity. And a study of four of the top ten Indian pharmaceutical firms reveals that many of the scientists who left for technologically more advanced regions of the world are now returning, bringing with them new skills and expertise from the west.
Peoples’ views on the use of genetic testing to prescribe and develop drugs, which has been seen as a technology that will accentuate the move towards ‘individualisation’ of healthcare, were the focus of work led by Professor Brian Wynne, associate director of Cesagen - one of three research centres in the Network, and based at the universities of Lancaster and Cardiff.
Professor Wynne and Elisa Pieri used focus groups to get the opinions of ‘hard-to-reach’ sections of the public, such as senior citizens, young people and parents of young children, as well as members of some ethnic communities in the north-west of England.
They found strong concerns about the increased, and often burdensome, levels of responsibility for people that would come from the being able to discover that they were susceptible to, or had early signs of, particular diseases, and about the necessary genetic testing it entails.
Professor Wynne said: “Contrary to much of what is written and said about personalised medicine, members of the public highlighted how such promised options would impact and place strains on their families and relatives, as well as potentially lead to stigmatisation.
“They were worried that it would limit their access to key services, such as insurance, mortgages, some medical coverage, and potentially even impact on their employment opportunities.”
People also felt that individuals’ social and financial status would play a role in whether certain changes in lifestyles and treatments, suggested as a result of testing, could really be achieved. As Professor Wynne underlined: “It is the credibility of the promises which drive such prospective innovations, and the real social conditions of their enactment, that are questions which government, industry and science need to take seriously as public policy issues.”
Professor Steve Yearley, director of the Network’s Genomics Policy and Research Forum said: “This landmark event, marking the Network’s transition to a new five-year phase of funding, gives the opportunity for a cross-fertilisation of ideas and healthy debate on the past, present and future roles of genomics in society.”
FURTHER INFORMATION CONTACT:
Emma Capewell, Press and Communications Officer, ESRC Genomics Policy and Research Forum on Tel: 0131 651 4746, or e-mail: emma.capewell@ed.ac.uk
ESRC Press Office:
Alexandra Saxon on Tel: 01793 413032, e-mail: alexandra.saxon@esrc.ac.uk
Danielle Moore, on Tel: 01793 413122, e-mail: danielle.moore@esrc.ac.uk
Phillippa Coates, on Tel: 01793 413119, e-mail: phillipa.coates@esrc.ac.uk
NOTES FOR EDITORS:
1. ‘Today’s Answers, Tomorrow’s Questions’ – takes place on Thursday 25 and Friday 26, October at One Great George Street, London SW1P 3AA. There is a dedicated conference website giving detailed programme information at: www.genomicsandsociety.org
2. Launched in 2002 to examine the social and economic consequences surrounding the development and use of genomics, the Economic and Social Research Council (ESRC) Genomics Network is one of the ESRC’s largest social science investments. The Network.consists of Cesagen (Centre for Economic and Social Aspects of Genomics) a Cardiff-Lancaster collaboration led by Professor Ruth Chadwick; Egenis (ESRC Centre for Genomics in Society) headed by Professor John Dupré at Exeter; and Innogen (ESRC Centre for Social and Economic Research on Innovation in Genomics) - collaboration between the University of Edinburgh and the Open University, directed by Professor David Wield; and the ESRC Genomics Policy and Research Forum, led by Professor Steve Yearley, Professor of Sociology of Scientific Knowledge at Edinburgh University. The ESRC recently announced continued funding totalling £17 million between now and 2012 for the three research centres - Cesagen, Egenis and Innogen.
3. Methodology: For the Cesagen qualitative study ‘Public Engagement and Personalised Medicine’, 14 focus groups were conducted. Data was analysed using a Grounded Theory approach, and the constant comparative method. Analysis was aided by Atlas.ti software.
4. The Economic and Social Research Council (ESRC) is the UK's largest funding agency for research and postgraduate training relating to social and economic issues. It supports independent, high quality research relevant to business, the public sector and voluntary organisations. The ESRC’s planned total expenditure in 2007 - 08 is £181 million. At any one time the ESRC supports over 4,000 researchers and postgraduate students in academic institutions and research policy institutes. More at http://www.esrcsocietytoday.ac.uk
5. ESRC Society Today offers free access to a broad range of social science research and presents it in a way that makes it easy to navigate and saves users valuable time. As well as bringing together all ESRC-funded research and key online resources such as the Social Science Information Gateway and the UK Data Archive, non-ESRC resources are included, for example the Office for National Statistics. The portal provides access to early findings and research summaries, as well as full texts and original datasets through integrated search facilities. More at http://www.esrcsocietytoday.ac.uk