Welcome to Uppsala!
In recent years, universities have done a lot of work to encourage research partnerships with industry. Medical schools are encouraging their research faculties to pursue entrepreneurial strategies (start ups) to start companies and partnerships with industry.
Public private partnerships in research have been debated for a long time. On the one side there is a perceived need to involve 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.
genetic research and rare diseases
Publically funded research in the biomedical field collects great amounts of data and biological samples. Public private partnership is especially interesting in the rare disease field. But there are barriers. We 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 for rare disease research.
About the workshop
During the workshop we investigate current practices for public private collaborations and initiatives on rare diseases. We hope to identify challenges and solutions in the light of ethically sustainable research through discussions on salient Public-Private Partnership initiatives and experiences and what we can draw from them.
The first day is divided into three informative sessions describing different forms of partnerships. The second day consists of a working session.
About the organisers
This workshop is arranged by Uppsala University's Centre for Research Ethics & Bioethics (CRB), RD-Connect and CHIPme. We welcome you to discuss public-private research initiatives in Uppsala on 7-8 November 2016.
On behalf of the organising committee,
Deborah Mascalzoni, Centre for Research Ethics & Bioethics (CRB), Uppsala University
RD-Connect is a unique global infrastructure project that links up databases, registries, biobanks and clinical bioinformatics data used in rare disease research into a central resource for researchers worldwide. The project will develop an integrated research platform in which complete clinical profiles are combined with -omics data and sample availability for rare disease research, in particular research funded under the International Rare Diseases Research Consortium (IRDiRC).
CHIP ME is a Cost-Action network of researchers from 26 European countries. The aim is to improve the state of the art by creating a community of researchers and stakeholders and linking existing initiatives which bring critical expertise in bioethics, social studies of science and technology, genetic technology, information and communication technology (ICT), stakeholder deliberation, and patient centred initiatives (PCI) with a new focus on new public-private interactions and consumer genetic testing.