What Remains Written: Documentation and the Ethics of Care

In May 2020, the first Collecting Covid archive at Amgueddfa Cymru (Museum Wales) was launched as a rapid response archive to the unfolding global pandemic. The archive asked Welsh residents to reflect on their daily lives and respond to questions about life in the pandemic whilst it was still happening. The Collecting Covid archive covers a range of topics, including how people cared for themselves, immediate friends and family or others within their community. As part of my PhD research, some of these original respondents are being invited back to explore their memories of this period and how their perceptions could have already changed.

Care, through acts of care within the community or by viewing carers themselves as heroes, became a defining theme during the 2020 Covid-19 lockdowns socially and politically within Wales. In this paper I will explore how notions of care are present within the archive and recent oral history interviews with archive participants. I will also address how the voices of carers themselves may be absent within the archive and the work that is being done as part of this research with the museum institution to capture their perspectives for the collection. For this approach, social care workers are given the space to discuss their memories and experiences from this time and express their emotional response to the lockdown period creatively within the museum space, combining oral history with museums and wellbeing research.

Sit, listen, write. In 1920s London, psychotherapists at the Tavistock Clinic did precisely this. The records produced through these encounters are now held at The London Archives, where the anxieties, hopes, and intimate reflections of hundreds of patients fill page after page. These disclosures were, largely, given voluntarily within a therapeutic context that presumed confidentiality and, crucially, an 'ahistoric invisibility'.

This paper engages with recent scholarship on the ethics of microhistory in the digital age (Laite, 2020), the challenges of amplifying voices silent in the archive (Hartman, 2008), and calls to foreground the ethical nature of history writing (Froeyman, 2016). It asks a familiar but unresolved question – what do we owe the dead? – and reframes it through the lens of expected visibility. Specifically, it argues for utility in considering whether historical subjects understood their information to be visible or invisible, whether such visibility was voluntary or involuntary, and how that visibility has changed through processes such as mass digitisation. This paper further distinguishes between reparatory and contextual historiography, arguing that each entail different ethical obligations in the use of sensitive sources. Finally, this paper connects the framework with modern data protection legislation, asking whether rendering specific sources visible meets the threshold of ‘damage’ or ‘distress’, and what this means for historical practice.

Using psychotherapeutic records as a test case, the paper asks where the ethical limits of making the invisible visible should lie by considering the historical subject’s expectations of the source’s visibility for 'history making'.

Online access to medical records is widely framed as an ethical advance grounded in patients’ rights to their own health information. This paper challenges the assumption that access alone promotes justice. Drawing on qualitative interviews with clinicians in pediatric psychiatry, it examines how digital transparency redistributes interpretive responsibility in ways that may undermine fair equality of opportunity.

Clinicians in the study endorsed patient online access to their medical records as a matter of fairness, yet also described how patients’ ability to engage with records varies significantly depending on social, educational, and linguistic resources. Medical records are produced within clinical and institutional frameworks that presuppose forms of literacy and interpretive capacity that cannot be assumed, particularly among vulnerable patients.

Engaging Tom L. Beauchamp and James F. Childress’ account of justice, and drawing on John Rawls and Norman Daniels, the paper argues that justice in regards to medical records requires more than equal access; it requires that patients have a genuine opportunity to benefit equally from what is provided. Expecting patients to independently interpret complex records risks imposing disproportionate burdens on those already disadvantaged.

The paper further situates online record access within a broader transformation of care. As administrative demands and digital systems expand, clinicians’ capacity to act as interpreters of medical information is reduced, shifting responsibility onto patients themselves. This reflects a move from a relational logic of care toward a model of individual responsibility.

From a critical medical humanities perspective, digital infrastructures participate in the production of unequal conditions for care. This suggests that justice concerns not only access, but whether patients have a fair opportunity to benefit from the information made available to them.