Revisiting Principlism in the Age of Big Data: Why Justice Must Redefine Informed Consent

Faden and Beauchamp's seminal work A History and Theory of Informed Consent argued that an individual's autonomy should be the overarching principle in informed consent and that considerations of social justice play only a marginal role. This paper contends that such an autonomy-centred model is no longer sustainable in the era of medical Big Data. Big Data systems operate through velocity, exhaustivity and interdependence, meaning that individual consent decisions inevitably affect collective outcomes.

This is particularly true for Christian conceptions of social justice, which foreground inter-relationality and balancing power. Reinhold Niebuhr grounds this understanding of justice in love of neighbour, while Margaret Farley's Christian feminist ethics of care perspective highlights compassionate respect between people. The argument then is that no decision is made in a vacuum. Informed consent choices are very much an issue of social justice.

In its final section, the paper proposes understanding medical data as a public good, analogous to public taxation or national healthcare systems, which belong to and benefit a collective and must therefore be governed collectively. It concludes that justice should stand as a coequal principle alongside autonomy in data governance, reconceiving informed consent as a relational and collective ethical practice.