DISC is a collaborative cluster uniting academics and professionals across multiple disciplines—law, biomedical sciences, information technology, data science, and sociology. We are driven by a shared commitment to unlock the full potential of sensitive health and biomedical data for scientific research, while rigorously protecting the rights and interests of research participants.

DISC (Data Integrity and Stewardship Cluster) aims to overcome legal and technical barriers to data processing for the purposes of scientific research carried out in the public interest while upholding participant fundamental rights and interests.

In line with the principle of ‘as open as possible, as closed as necessary’, DISC will strive to develop a harmonised approach to data processing for scientific research purposes that maximises openness where feasible and institutes necessary restrictions and safeguards to protect participants' rights and ensure trustworthy governance of their data. This will enable ethical exploitation of the vast potential of data-driven scientific research and innovation. We commit to promoting and implementing open research data and open science policy in pragmatic ways, and pledge to align our national policy with the overarching EU policy on data protection and open science objectives, thereby cultivating an integrated, international vision of open data and science.

DISC envisages seamless access, use and sharing of research data which is secured and augmented by cutting-edge technologies and which greatly accelerates research and discovery, within a legal framework that provides robust data privacy protection and safeguards for research participants.

Research carried out in the public interest calls for upholding the rights and interests of both researchers and research participants, as well as the public interest itself, thus entailing a shared commitment towards both open science and respect of individual fundamental rights and interests, such as those relating to data privacy and non-discrimination. The latter includes considerations of equitable access to data, as well as avoiding discriminatory implications of the use of the data. 

We envision a world in which researchers are not only empowered with clear guidelines grounded in a comprehensive legal framework, but also equipped with innovative tools that facilitate their research endeavours. In this landscape, legal certainty, procedural clarity, and advanced technological facilitation become the norm for scientific exploration, enabling breakthroughs while respecting and protecting research participants’ rights and interests, and raising the University of Malta (‘UM’) to the ranks of globally-recognised leaders in health and biomedical research. 

In achieving this vision, it is our hope to build upon the successes of prior Horizon 2020 and Horizon Europe efforts that have delivered functional prototypes or active implementations of privacy-preserving and GDPR-compliant human biological data exchange. Prior EU consortia have proposed diverse organisational tools including: data access agreement templates, informed consent templates, data protection impact assessment templates, and standard operating procedures (SOPs) for data access committees. Technical models have also been pioneered including: GDPR-compliant federated data analysis methodologies, interoperable multi-site data catalogues that incorporate discoverable ethical-legal metadata, and de-identification techniques that are supported with accurate estimates of re-identification risk.

These efforts have achieved enormous success in ideating practicable methods of sharing data whilst achieving both security and efficiency. However, the potential to translate these efforts into clinical settings, or to implement them as standard practices in the conduct of research, has been limited due to their time-limited and experimental character. Implementing a Cluster to pursue these efforts will enable the pursuit of long-term excellence in data protection law compliance, and open data sharing, within Malta and the EU.

DISC’s work supports:

• Better healthcare through improved diagnostics and treatments.

• Evidence-based policymaking in Malta and the EU.

• Economic growth through innovation and a thriving knowledge economy.

• A culture of trust and participation in scientific research.

You can contact us by reaching out to anyone of our team.