Caring relationalities, responsiveness and responsibilities in the post-genomic era: A large-scale analysis across qualitative datasets

Genomics (the study of the genes in our DNA) is playing an increasingly important role in UK healthcare through prevention programmes and in rare disease and cancer diagnoses. Over 3.5 million UK residents live with a rare and/or genetic condition, with numbers set to increase as genomic testing becomes embedded in routine healthcare. Whilst new technologies promise improved diagnoses and treatments, less attention has been directed at the needs of, and support for, those affected by the process and outcomes of genomic testing.
Our current small-scale study has highlighted the wider implications of genomic testing beyond the individual, including how experiences of the process (re)shape caring identities, practices and relationships within families. Our work chimes with the interests of support organisations involved in the development of this proposal. Many have raised concerns about the scale of under-supported care-work undertaken by individuals and families and the propensity for many supporting/living with rare or undiagnosed genetic conditions to ‘fall between the gaps’ in health and social care provision. Our work is especially timely given the widespread care crisis, which is likely to continue to exacerbate the situation for many.
Although small-scale qualitative studies have been crucial in highlighting lived experiences, most have tended to focus on one genetic health condition, the perspectives of specific patient/carer groups, or emphasise only clinical aspects of care. We currently lack a comprehensive understanding of the common/recurring care-oriented issues and how these are experienced by those in different circumstances. Without a solid evidence base, we risk fragmented policy responses or support initiatives that focus only on specific issues or groups.
To address this, we will draw on existing data infrastructure, including ESRC investments, and will harness a wealth of underused qualitative datasets housed in UK archives. A scoping exercise has identified 13 suitable datasets, that include rich accounts of lived experience of genomic medicine, all with an implicit focus on care. Our vision is to leverage the collective potential of these datasets (c.500 interviews) and to use an innovative and award-winning approach to large-scale qualitative analysis (or ‘big qual’) co-pioneered by the Project Lead. The breadth-and-depth method combines Artificial Intelligence [AI] with conventional forms of qualitative analysis, in a manner that respects the principles underlying qualitative work.
By conducting a pooled qualitative secondary analysis of these datasets, we can ask new comparative questions, draw broader conclusions and consolidate the evidence base. Structured around three interconnected work packages the project will: (1) provide an extensive overview of the systemic care-oriented issues individuals/families face; (2) explore the influence of changes in the economic, social and health-policy landscape over the past 15-20 years; (3) examine, in detail, a selection of case studies that illustrate the diversity of experience.
Ultimately, the proposed project will have both scientific and social impact. We will shed light on the implications of the burgeoning UK genomics industry on caring identities, practices and relationships of those affected by the process and outcomes of genomic testing. We will help build the fledgling interdisciplinary field of ‘genomic care’ by contributing conceptually and substantively to understandings of care within and beyond families. We will inform emergent policies and support initiatives by working closely with support and policy organisations to co-produce recommendations and tailored resources that help ensure the care-work of affected individuals and families is better understood and supported.