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'Rules, Principles and Proportionality: Essential Items in a Decision Makers Toolkit'
This paper asks how rules and principles can be best used to optimise decision-making in the context of secondary uses of health data for research, with a focus on the function of proportionality as an ethical and legal approach.
The legal landscape governing (and impeding)secondary uses of data for health research in Scotland and more generally, the UK, is notably complex. Discussion is framed around the context of data-linkage of electronic health records (EHRs) in Scotland which offers an important case-study with which to understand the different roles which rules and principles play. In particular, the principle of proportionality is offered as a fundamental ethical and legal tool and benchmark used for achieving good governance.
Both rules and principles are fundamental for robust legal and ethical governance and cannot facilitate good governance independently of one another. In many situations, the exercise of discretion is inevitable, principles play a vital role in signposting the considerations which must be given due regard. Rather than shying away from the important goal of responsible data sharing due to fear of sanction, where appropriately used, principles can empower decision-makers. The principle of proportionality has much to offer in the context of health data linkage both from an ethical and legal perspective.
In order to make the most out of the regulatory landscape around which decision-makers must navigate, decision-makers must use both rules and principles in a meaningful way. The principle of proportionality can be an especially valuable tool both from a legal and ethical perspective.