Workshop “Ethically and legally sustainable partnership between industry and public funded research initiatives: PPP and Rare diseases as a case study”

In recent years, universities have done a lot of work to promote research partnerships with industry. Medical schools are encouraging their research faculties to pursue entrepreneurial strategies (start-ups) to start companies and partnerships with industry. Uppsala University, RD-Connect and CHIPme, invite you to discuss these issues in a two-day workshop looking at current practices for public private collaborations and especially initiatives on rare diseases on November 7-8 this year.

Public private partnerships in research have been debated for a long time. On one hand, there is the perceived need to involve more industry in the research-flow in order to maximize efforts in the search for results and therapies. On the other, there is fear and concern regarding the ethical challenges, conflicts of interest and exploiting of public resources.

Publically funded research in the biomedical field collects great amounts of data and biological samples that could be extremely precious in the industrial context for translational purposes. Public private partnerships are especially interesting in the rare disease field. However, there are barriers and concerns. We still lack generalized common regulatory, technological and financially supportive frameworks. This places a burden on the potential positive impacts on the wellbeing of citizens. There is a need to explore different partnership models and discuss their relevance for genomic research and the particular challenges and opportunities for rare disease research.