A topic often left out of discussions about the promise of personalized medicine that science and society offers for the future is whether or not ordinary people want that extra responsibility. Does everyone want to know if they are susceptible to certain diseases?
A two-day showcase called Genomics and Society: Today’s Answers, Tomorrow’s Questions – is taking place in London on Thursday 25 and Friday 26 October 2007. This 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).
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.”
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.
- Economic & Social Research Council