BioMedBridges Ethical governance framework
One objective of the BioMedBridges project is to better enable researchers to access data, increasing its utility with the ultimate goal of benefiting society. Examples include facilitating new discoveries in health research and allowing re-analysis of expensive, rare or unrepeatable investigations. At the same time, BioMedBridges aims to continue to protect the interests of research participants with regards to their privacy and confidentiality.
The BioMedBridges Ethical Governance Framework sets out policies for the project that specifically relate to ethical and regulatory issues surrounding the access of data used within the project. The aim of the framework is to enable the BioMedBridges project to operate within agreed terms with respect to participant consent, ethics committee approvals and national regulations, ensuring that researchers supply and access data based on a common ethical framework focussing on specific issues that are key to the development and operation of BioMedBridges.
As the project evolves, adjustments may be made to this framework. Any adjustments will be developed and agreed by the Ethical Governance Committee and approved by the Executive Steering Committee. Together with the Independent External Ethics Adviser, and in the context of deliverable 5.2 "Tool for assessment of ethical and regulatory requirements", project partners have also developed suitable participant information sheets and consent templates.
BioMedBridges is also working to improve the interoperability between European research infrastructures. This work involves laying the groundwork that will facilitate the exchange, use and analysis of publicly-funded biomedical research data. Enabling researchers to make better use of exisiting experimental data is a sensible economic and ethical approach, allowing data re-use in different or new contexts. However, there are many legal hurdles to overcome because the data is biomedical in nature.