Beauchamp and Childress’s principlism, particularly its emphasis on autonomy, has long shaped bioethical discourse. In A History and Theory of Informed Consent (1986), Beauchamp and Faden subordinate justice to autonomy and beneficence, asserting that issues of informed consent are not fundamentally problems of social justice. In the era of Big Data and AI-driven medicine, this framework is inadequate. Medical data serves as a critical resource in precision medicine and genomics, yet its collection and use may disproportionately benefit socially privileged groups if the data underpinning it does not reflect a whole population, exacerbating health inequities. Traditional autonomy-based informed consent is ill-suited to the scale and complexity of Big Data, where meaningful individual consent becomes impractical. Instead, an alternative framework grounded in Christian ethics, particularly agape-centred justice is needed.
This paper argues that a justice-centred approach to data governance – modelled on collective responsibility rather than individual choice – better aligns with Christian commitments to human flourishing. A solidarity-based model, akin to public taxation, could ensure equitable data distribution and democratic oversight, mitigating the biases inherent in AI-driven medicine.
Certain Christian moral traditions, particularly those emphasising solidarity, the common good, and balancing power, challenge the neoliberal individualism rooted in principlism. The best-known example could be Reinhold Niebuhr’s Christian Realism, but some feminist ethics of care approaches fit here too (Vargas Baretto; Sullivan-Dunbar; Wildung Harrison). These thinkers criticise the liberal assumption that individuals are purely rational agents capable of autonomous decision-making, instead arguing that they are shaped by power structures and bound by social obligations. For Niebuhr in particular, justice is the earthly expression of agape and as such ensures that collective structures lessen, rather than worsen, inequality. The principlist model of autonomy-based informed consent is inadequate in the context of Big Data as it assumes that individuals have equal power to negotiate their data rights, but an agape-centred justice framework shows that this is not true in practice, as structural injustices and power imbalances prevent truly free participation.
In practice, this would lead to advocacy for independent institutions to regulate data fairly for all in the manner of a public good (similar to taxation or universal healthcare models). Therefore, a Christian justice-based model of Big (medical) Data governance would emphasise a communal responsibility to protect the vulnerable and ensure that data is used not only for private benefit but the common good. This paper calls for a reconsideration of principlism’s dominance in bioethics through the lens of Christian justice, particularly questioning autonomy’s role in medical Big Data as data governance increasingly shapes health outcomes.
Beauchamp and Faden’s principlist approach in A History and Theory of Informed Consent subordinates justice to autonomy and beneficence, asserting that issues of informed consent are not fundamentally problems of social justice. Medical data, especially in the era of Big Data and AI-driven medicine, often benefits privileged groups while reinforcing health inequities. Traditional autonomy-based informed consent is impractical at this scale, necessitating a justice-centred alternative. Drawing on Reinhold Niebuhr’s Christian Realism as well as some feminist ethics of care approaches, this paper argues for an agape-centred model of justice that prioritises collective responsibility over individual choice. This approach advocates for independent institutions to govern data as a public good, ensuring equitable distribution and democratic oversight.