This project will draw on academic scholarship and the input of key academics, industry figures and international policy makers in developing a policy/working paper on collaborative business models in international genomics research and biobanking, for the Organisation for Economic Cooperation and Development (OECD).
PROJECT DESCRIPTION
Collaborative Platforms in Genomics – Institutional Arrangements and Business Models
Dr Naomi Hawkins (Principal-Investigator)
Sponsor: ESRC and Organisation for Economic Cooperation and Development (OECD)
Project length: 12 months.
About the Project
National and international biobanks and genomic initiatives are at the heart of the development and use of personalized medicine. These infrastructure projects draw on the involvement of large groups of patients and members of the public, and they are frequently set up with public and charitable funding. Modern biomedical research is now highly dependent on the use of these large biobanks and genomics resources, for both public and private actors alike. Important issues arise from the development of these resources, including their interoperability, sustainability and governance challenges. The importance of protecting the participants whose samples and data are the core of these collections is recognised, but such ethical governance is challenging in a global world, with a plurality of cultural and legal frameworks. The interaction between the public and private actors in this environment also gives rise to significant challenges for governance and for business models. These competing problems must be addressed, in order to maximise the innovative potential of these resources, for the good of the public.
The project addresses the following key policy questions:
- What are the goals, best practices, and standards in IP licensing, data ownership and sharing of major genomic platforms and biobanks?
- What are the approaches to fund and resource collaborative platforms for personalized medicine? What can be learnt from the most successful, and sustainable business models in both public and private sectors?
- What are the options to uphold the social contract and value sharing among funders, innovators, and society?
Dr Hawkins has been commissioned to develop policy recommendations for institutional arrangements and business models underlying collaborative platforms in genomics and biobanks for personalized health. This project will seek input of ideas and best practices from representatives of major national and international platforms in genomics and biobanks, and from a diverse range of experts at the triple interface between IP and data policy, business, health systems. Dr Hawkins will take part in a series of expert meetings with biobank and genomics research experts, business and industry figures and policy makers.
Photo: Thor Deichmann