Professor Brian Wynne, associate director of Cesagen, one of three research centres in the ESRC Genomics Network (EGN), led a survey to ascertain what members of the public thought about the use of genetic testing to prescribe and develop drugs.
The study found strong concerns about the increased, and often burdensome, levels of responsibility for people that would come from being able to discover that they were susceptible to, or had early signs of, particular diseases, and about the necessary genetic testing it entails.
"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," said Prof. Wynne.
"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."
While testing for genetic predispositions to a disease is, in principal, undoubtedly a good thing, this study serves to highlight that, in practise, it is also an ethical minefield.
Of course, the term 'personalised medicine' not only refers to predisposition tests but also to using genetic information to prescribe drugs, or combinations of drugs, that will treat a specific patient's disease better. Several marketed drugs already come with companion diagnostic test to check a patient is suitable to receive the drug, for example Genetech's Herceptin (trastuzumab). GlaxoSmithKline also has a genetic test to go with one of its HIV drugs to check the patient won't get a specific side effect.
Prof. Wynne and colleague 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.
The results show that governments, the pharma industry and scientists in general have a long way to go to ensure that genetic testing can be used in an ethical manner and thus reassure the public that they should do it.
Many people are already convinced and home gene testing kits are available. However, many genetic associations of diseases are yet to be fully validated in a large number of people and so the results can't always be relied upon.
Even if the dream of personalised medicine is eventually realised and is regulated to the extent that these fears of stigmatisation prove unfounded, there remains the issue of cost.
The people taking part in the study 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."
