The introduction of Human and Social Sciences into the domain of rare diseases is one of the priorities of the Second Rare Diseases Plan 2011-2014 and is a link that is also supported by the Rare Diseases Foundation. This interaction is particularly relevant in light of the introduction of high-throughput sequencing (HTS), which is raising a number of concerns relating to healthcare economics as well as to social and ethical challenges. Within this context, human and social sciences are fundamental to evaluating the benefits to society in the broadest sense (quality of life, healthcare strategies, medical practices, healthcare networks, costs and ethical challenges). The aim of research in these areas is to help society, through description and an understanding of current developments, to pre-empt these issues.
The concerns presented by HTS are crucial one and raise issues relating to the use of this technological innovation at two levels: societal and individual.
- For each of these angles, the FHU aims to :
- Offer multidisciplinary insight, by way of support to local ethics committees, for professionals, patients and citizens faced with these issues, for which collective consultation is required.
- Identify the problems encountered and participate in discussions with the competent teams at the national level, as well as the National Ethics Committee.
- Identify and develop new avenues of interdisciplinary research linking Human and Social Sciences with medicine in order to examine the preferences of patients, families and health professionals regarding technological innovations (HTS) or to measure the associated economic and social risks.
To facilitate and co-ordinate these efforts, the interregional ethics centre for Bourgogne/Franche-Comté (EREBFC) and the Health Economics Team of the Dijon Economics Laboratory (EES-LEDI, University of Bourgogne) are the linchpins in this endeavour.