Accepted Paper:

When promises meet demands for translation, evidence and sustainability: the Balkanisation of personalised medicine  

Author:

Giovanni De Grandis (Norwegian Uni. of Science and Technology)

Paper short abstract:

Personalised medicine arguably emerged as hyped-up promissory science. These promises are now confronting the imperatives of translation, evidence-base and cost containment so prominent in healthcare, resulting in alternative and competing versions of personalised medicine and its promises.

Paper long abstract:

Personalized Medicine emerged in the late 1990s as a promise to revolutionise our approach to healthcare thanks to the breakthrough discoveries of genomics and molecular biology. Now an increasing body of literature is dealing with the problem of translating promises into actual clinical practices and health outcomes. Several challenges have been identified: external validation and effectiveness, collecting large data repositories and building adequate IT infrastructures, gaining clinicians' acceptance, adapting regulatory frameworks, securing adequate coverage from health insurances, establishing cost-effectiveness of new therapies, avoiding inequality of access, devising adequate models of consent, confidentiality and disclosure, educating the public and supporting patients' decision making. The demands of these challenges have generated different responses. An interesting trend, with numerous variations, is the attempt to combine genomic medicine with patient-centred care. Within this trend a watershed exist between those who see the process driven by technoscientific advances and see attention to patients as rather instrumental, and those who take patients' interests as central and are prepared to scale down substantially the promises and expectations of genomic medicine. This divide reflects a pre-existing tension between a biomedical model of medicine and a more humanistic and holistic view of medicine. For many decades medical technology has been accused to de-humanize medicine and to drive up costs unsustainably. Personalized medicine is currently a very fragmented and contested vision, that reflects different understandings of medicine, different strategies in rethinking promises and in balancing commitments to the interests of society and of the research community.

Panel T094
Emerging science and technology : questioning the regime of promising