Public not so sure 'personalized medicine'
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."