Genomics in the clinic: Context, care and communication

Programme stream(s): Cancer control / living with and beyond and cancer outcomes
Programme session type(s): Specialist session

Chair: Sarah Cunningham-Burley, University of Edinburgh, UK
Speaker: Rikke Sand Anderson, Aarhus University, Denmark
Speaker: Sophie Day, Goldsmiths, University of London, UK
Speaker: Anne Kerr, University of Leeds, UK

11:00-12:30

Room: Dochart

The complexity of genomic information presents challenges for health care professionals, patients and their families as they make meaning from risk information and negotiate the future. Improving genetic literacy and the effective communication of information only partially addresses the contextual way in which people make sense of information and its relevance for their lives.

This session will draw together current social research in this area, as genomics enters the clinic, through trials as well as standard of care, in order to understand the ways in which genomic knowledge is taken up in different settings. The session will enable attendees to learn: How patients are engaging with genomic information as they confront this during their cancer journey How patients and health care professionals use this information within the range of decisions that are made during care How we can create approaches to communication and genomic literacy that are sensitive to the diverse contexts and needs of patients How social scientific research can enrich understanding of the practice of genomic medicine in relation to cancer.

Identifying the early cancerous body
Speaker: Rikke Sand Anderson
Affiliation: Aarhus University

Abstract:

This presentation discusses ongoing changes in orientations to cancer disease control in the Global North, particularly health promoter attempts to identify the early cancerous body. The paper suggests that the emphasis on early diagnosis of cancer aligns ideas on a symptomatic management of the public with a process in which ‘what counts as cancer symptoms’ is steadily being subdivided and expanded. This alignment, the paper suggests, is an example of how biomedicine extends its boundaries into everyday forms of embodied, social life and adds to the building contemporary forms of disease sensitization, defined as a form of embodied subjunctivity experienced as a potential, or the ever-present ‘what if’. The presentation adds to panel discussions on genomic research, by reflecting on how our human desire to alleviate or prevent suffering, alters the social and moral values that we place on bodily sensations and their management.

Exploring genomic medicine at the interface of cancer research and clinical care
Speaker: Anne Kerr
Affiliation: University of Leeds

Abstract:

Genomic medicine is at the forefront of contemporary approaches to cancer research and care. This complex of stratified screening, clinical trials, research studies and targeted treatments is widely welcomed on the basis that it will transform professional practice and patients’ experiences, rendering cancer a treatable or preventable condition. There are, however, considerable challenges to the realisation of these benefits. In this paper we explore this from the perspective of health professionals and scientists involved in genomics, research and/or cancer care. Drawing on a series of qualitative interviews with professionals actively engaged in diagnosis, treatments, screening, trials and/or studies involving genomic medicine for cancer, we explore three main concerns that temper their enthusiasm for genomic medicine: (i) increasingly ‘difficult conversations’ with patients and families; (ii) the increased complexity of cancer biology, trials, and associated technologies of diagnosis and treatment; (iii) professional, organisational and funding challenges in cancer care. We argue that these concerns are part of practitioners’ efforts to provide good quality care to patients and suggest that there needs to be greater emphasis on supporting these efforts, alongside improvements in genomic education for professionals and patients more generally.

People Like You: Genomics in a London breast cancer service
Speaker: Sophie Day
Affiliation: Goldsmiths University, London

Abstract:

NHS England’s choice of the term, personalisation, in its 2016 vision for improving medical outcomes raises critical contextual issues for clinic participants. Are you presenting as an individual patient, a member of a wider category or both at the same time? Singular and plural remain intrinsically connected in medical practice despite widespread reports that genomic personalisation constitutes a new ‘me’ as opposed to one-size-fits-all ‘we’ medicine (Donna Dickenson 2016). Drawing on interviews, observation and a range of meetings from 2013-14 in a breast cancer service, I suggest that applications of genomics conform to longstanding practices of sorting ambiguities and uncertainties of address to a you that is both singular and plural. Even so, calibration between different aspects of your situation with breast cancer may be especially provisional given the speed of change in cancer, knowledge, techniques and therapies. ‘Me’ medicine, using precise techniques of genomic individuation (n of 1), will appear with therapeutic failure in these clinics since, by definition, there are no evidence-based treatment options (that is, no ‘we’). Paradoxically, participants may also welcome such situations if they then direct clinical attention to a broader range of needs and preferences, that is, to a personalised care.