The ESRC Genomics Network (EGN) brings together the world’s largest concentration of social scientific research in this field. One of the numerous topics this organisation has looked into is the whole subject of people’s perception of Personalized Medicine.
In summary Personalized Medicine is about treating patients according to their individual genetic make-up. Medicine has traditionally been a ‘one-size fits all’ model but now with advances in genetics, pharmacogenetics, nutrigenomics etc, doctors now have the tools to start to tailor treatment programs to their individual patients.
However, Prof Brian Wynne and Elisa Pieri of the EGN have 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 ethnic communities.
Their findings show that members of the public showed strong concerns about the increased and often burdensome levels of responsibility for people that would come from being able to discover they were susceptible to, or had early signs of a particular disease and about the necessary genetic testing it entails.
Professor Wynne said “Contrary to much of what is written and said about personal medicine, members of the public highlighted how such promised options would impact and place strains on their families and relatives as well as potentially leading to stigmatization. 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.”
It is most obvious that there is still much work to be done in allaying individual fears and in my opinion this can only be achieved by all organizations affected by these advances such as government, industry and science ‘joining up’ and singing from the same hymn sheet. This should then be overlayed through information and education programs for patients which demystify the whole subject.