The Liverpool University Centre for Archive Studies (LUCAS) will be holding its seminar series on archives, health and social care. Events will be held in-person and via Zoom - please email Alex Buchanan ([log in to unmask]) for Zoom access details.

Seminars will be held in Lecture Theatre 1 in the University of Liverpool, Gordon Stephenson Building, Bedford Street, Liverpool, starting at 3pm. 

Booking details here: https://www.eventbrite.com/cc/lucas-seminar-series-2069169

The series is as follows:

Wednesday 26 April
Leah Gilman (University of Manchester): Bypassing the Official Record: Exploring the Social and Ethical Issues Raised by Direct-to-Consumer Genetic Databases for Donor Conceived Children and their Families 

Companies such as Ancestry are already familiar names in the record-keeping world, enabling online access to archival records and providing income streams and sponsorship for record-keeping activities. Record-keepers may, however, be less familiar with their offshoots, such as AncestryDNA and 23AndMe, which claim to provide their customers with knowledge about themselves, including their genealogy, as ‘revealed through their DNA’, offering the promise of a ready-made family tree and bypassing archival research. Use of such direct-to-consumer genetic testing (DTCGT) has increased exponentially in the past decade. 

Customers can also opt to be ‘matched’ with genetic relatives registered on the provider’s database. Presented as a way of building personal connections within their family tree, the feature also raises questions about the viability of current regulatory systems of information sharing in third party reproduction. These are typically organised through central registers and often premised on ensuring donors of reproductive material are anonymous (either permanently or temporarily) to the people and families they help to create. The rise of DTCGT means that parents through donor conception can register their child(ren) on DTCGT databases and thus search for the donor, donor siblings or other donor relatives during their child’s childhood. Older children and teenagers could also register themselves on DTCGT databases.

In this presentation, we share data produced in interviews with parents through donor conception, donor conceived people, donors and relatives of donors, who took part in the ConnecteDNA study. We explore how these different groups define and explain what is the ‘right age’ for donor conceived people to know their donor relatives and how their perceptions shape their interactions with ‘official’ registers and/or ‘unofficial’ use of DTCGT and social media to trace their child(ren)’s genetic relatives. We explore how participants’ views and behaviours are shaped by culturally-specific understandings of age and the life course and their relationship to kinship and identity, as well as concerns about data sharing and safeguarding. We argue that policymakers should pay close attention to the social and relational significance of age when planning any regulatory response to the rise of DTCGT in this context.

Wednesday 3 May
Elizabeth Shepherd (Department of Information Studies, UCL): ‘My lack of voice’: human-centred recordkeeping

In family settings stories, photographs and memory objects document significant events, celebrations and milestones and support narratives of identity and belonging. But for some people, such as looked-after children, these are missing. Children in care often lack such narratives, especially where their experience has been complex, disrupted or traumatic. They may be unable to fill gaps in their memories or answer questions about their early lives.

Collaborative research at UCL brought together care leavers, academics, social workers and information professionals to explore the challenges this presents. MIRRA (Memory, Identity, Rights in Records, Access) was an AHRC-funded project, co-produced with The Care Leavers’ Association. Since 2017, MIRRA has explored information rights in the context of child social care in England, particularly from the perspective of care-experienced people who sought access to records about their childhood later in life. 

MIRRA identified preservation and access challenges with child social care recording. Critically, the voices, experiences and feelings of the children themselves are rarely captured. Young people often don’t know what has been written and kept in their records, and have no access to records management systems. Social care recordkeeping reflects their broader experience of powerlessness and lack of self-determination over their own lives, an inequality which may have long term impacts on personal history, identity and belonging. The lack of voice is one of the most powerful symbols of the information inequality experienced by care leavers. A follow-on project MIRRA+ with OLM Systems, a major social care software provider, developed a digital daily journaling app specification which will enable young people to collaborate in the creation and content of records while they are in care. 

This paper will draw on the findings of the research which supports a fundamental shift towards participatory recordkeeping in child social care, to explore more human-centred approaches to recordkeeping. 
Details of the MIRRA project are at: https://blogs.ucl.ac.uk/mirra/ 

Wednesday 10 May
Paul Atkinson (University of Liverpool): Adventures in the digital archives of contemporary health policy

This seminar will discuss how a historian finds and uses sources for the contemporary history of health policy. I am writing a history of the National Institute for Health and Care Excellence (NICE), established in 1999. This organisation produces treatment guidelines and appraisals of health technologies such as drugs. In effect, government delegates to NICE the making of policy on the National Health Service’s choices about how to deliver each kind of care.

NICE belongs to the generation of ‘born digital’ organisations. Its records are electronic. As an organisation which does its business by public consultation, and needs transparency to make its products credible, NICE publishes a vast amount online. Much of this is preserved in the Government Web Archive, a resource of the National Archives, whose advantages and difficulties I will discuss. Like other contemporary historians, and in contrast to those examining earlier periods, my problem is often finding the needle in the haystack. NICE, and the Department of Health and Social Care, also preserve unpublished material in digital form, and I will discuss access to this.

Much contemporary political history uses published material like policy statements, records of debates, and journalism. Working papers are more elusive, though the government’s now reach the National Archives in twenty years, no longer thirty. Interviewing participants in the events I research identified private collections of papers, which add to the picture.

One of the historian’s first questions with sources is, what process of selection has led to this document being available and not others? Whose point of view is privileged in this? As a former civil servant, I will say something about the process by which government’s working documents are preserved or destroyed, and its implications for scholarship.

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