Digital health – a new medical cosmology? The case of 23andMe online genetic testing platform

This article argues that commercial digital health platforms and devices commodify participatory features of the digital creating a new medical cosmology. Drawing on sociology on medical cosmologies, research on digital media and marketing and an analysis of the 23andMe online genetic testing platform, I identify three features of this cosmology. First, digital health seeks to foment ‘flow’ or enjoyable, continuous immersion in health. Second, digital health configures its consumers as ‘co-creators’ of health data and knowledge together with companies and other consumers. Third, digital health frames medical knowledge as tentative, up for revision and scepticism by expert and lay science. The way in which digital health configures consumers as immersed, creative and sceptical gives it an open-ended and participatory air. However, the conceptual discussion and the analysis of the 23andMe platform highlight that these features represent commercial capture of the lifeworld, even if they appear radical against classical medical cosmologies

State of play in direct-to-consumer genetic testing for lifestyle-related diseases: market, marketing content, user experiences and regulation

Direct-to-consumer (DTC) genetic tests have aroused controversy. Critics have argued many of the tests are not backed by scientific evidence, misguide their customers and should be regulated more stringently. Proponents suggest that finding out genetic susceptibilities for diseases could encourage healthier behaviours and makes the results of genetics research available to the public. This paper reviews the state of play in DTC genetic testing, focusing on tests identifying susceptibilities for lifestyle-related diseases. It will start with mapping the market for the tests. The paper will review (1) research on the content of the online marketing of DTC tests, (2) studies on the effects of DTC genetic tests on customers and (3) academic and policy proposals on how to regulate the tests. Current studies suggest that the marketing of DTC genetic tests often exaggerates their predictive powers, which could misguide consumers. However, research indicates that the tests do not seem to have major negative effects (worry and confusion) but neither do they engender positive effects (lifestyle change) on current users. Research on regulation of the tests has most commonly suggested regulating the marketing claims of the companies. In conclusion, the risks and benefits of DTC genetic tests are less significant than what has been predicted by critics and proponents, which will be argued reflects broader historical trends transforming health and medicine. Copyright © 2013 The Author

Genomic susceptibility testing and pregnancy: something old, something new

This essay explores how testing for common and complex or genomic, as opposed to genetic, susceptibility to deep vein thrombosis both challenges and consolidates old social discourses on genes, gender and pregnancy. The nexus between genetics and reproduction usually crystallizes in the moral dilemma of selective termination. This essay examines on-line discussion among women with a genomic predisposition to deep vein thrombosis, which is associated with miscarriage and stillbirth. It explores the women’s exchanges on what to “do” in order to safely carry to term a foetus, which may always also have the genomic susceptibility. Interpreting DNA not in terms of predicting fate but of suggesting how to modify one’s behaviour in order to give and care for life blunts its eugenistic edge. However, this interpretation also shoulders discussants with the complicated and laborious responsibility of modifying themselves, their life-styles and the life-styles of their families—all of which falls within women’s traditional labour of love in the privatised age of bioindividuality

Methodologies for cultural and social studies in an age of new technologies

Methodologies for cultural and social studies in an age of new technologie

Shifting metaphors in direct-to-consumer genetic testing: from genes as information to genes as big data

This article analyses shifts in metaphors in direct-to-consumer genetic testing, analyzing the websites and select media coverage of the nutrigenetic testing company Sciona (2000–2009) and the personal genome service 23andMe (2006–). Sciona represented genes and communication through the classical metaphor of information; genes coded for disease, and this information was transmitted from the expert company to the consumers. 23andMe represented genes and communication through a new metaphor of big data; genes were digital data or a resource that was browsed, correlated with other data, uploaded and retrieved across lay customers, websites and companies. In terms of understanding health 23andMe tests and research still cast genes as coding for disease to be mitigated by lifestyle change and targeted drugs. However, rendering genes digital data or resources changed their social and economic meaning; genes could be circulated, shared and traded, which legitimized 23andMe’s business model of consumer genetics and private biobanking

The mundane experience of everyday calorie trackers: Beyond the metaphor of Quantified Self

In this article, we build on the work of Ruckenstein and Pantzar (2015), who have demonstrated how our understanding of self-tracking has been influenced by the metaphor of the Quantified Self (QS). To complicate this very selective picture of self-tracking, we shift the focus in understanding self-tracking from members of the QS community to the experiences of ‘ordinary man and woman’ (Bakardjieva and Smith, 2001). We, therefore, interviewed ‘everyday calorie trackers’, people who had themselves started using MyFitnessPal calorie counting app but were not part of any tracking community. Our analysis identifies three main themes – goals, use and effect – which highlight the mundane side of self-tracking, where people pursuing everyday, limited goals engage in basic self-tracking and achieve temporary changes. These experiences contrast with the account of self-tracking in terms of long-term, experimental analysis of data on the self or ‘biohacking,’ which dominates the QS metaphor in the academic literature

Gaps in communication between different staff groups and older adult patients foster unnecessary antibiotic prescribing for urinary tract infections in hospitals: a qualitative translation approach

BackgroundStudies have reported large scale overprescribing of antibiotics for urinary tract infection (UTI) in hospitalised older adults. Older adults often have asymptomatic bacteriuria, and clinicians have been found to diagnose UTIs inappropriately based on vague symptoms and positive urinalysis and microbiology. However, the joined perspectives of different staff groups and older adult patients on UTI diagnosis have not been investigated.MethodsThematic analysis of qualitative interviews with healthcare staff (n = 27) and older adult patients (n = 14) in two UK hospitals.ResultsInterviews featured a recurrent theme of discrepant understandings and gaps in communication or translation between different social groups in three key forms: First, between clinicians and older adult patients about symptom recognition. Second, between nurses and doctors about the use and reliability of point-of-care urinary dipsticks. Third, between nurses, patients, microbiologists and doctors about collection of urine specimens, contamination of the specimens and interpretation of mixed growth laboratory results. The three gaps in communication could all foster inappropriate diagnosis and antibiotic prescribing.ConclusionInterventions to improve diagnosis and prescribing for UTIs in older adults typically focus on educating clinicians. Drawing on the sociological concept of translation and interviews with staff and patients our findings suggest that inappropriate diagnosis and antibiotic prescribing in hospitals can be fuelled by gaps in communication or translation between different staff groups and older adult patients, using different languages and technologies or interpreting them differently. We suggest that interventions in this area may be improved by also addressing discrepant understandings and communication about symptoms, urinary dipsticks and the process of urinalysis.</div

Beyond beliefs: risk assessment technologies shaping patients' experiences of heart disease prevention

Social science research on lifestyle-related diseases typically focuses on patients' understandings and beliefs and takes the clinical risk for granted. We interviewed 30 healthy UK patients at high risk of heart disease, recruited from a family history trial at 2weeks and 6months after a discussion with a clinician about their risk, lifestyle and medications. The participants took four different paths: (i) pharmaceutical (most common, risk reduction with cholesterol lowering statins), (ii) mixed (statins and behaviour change), (iii) behavioural (behaviour change, focus on wellbeing) and (iv) 'lost' (no prevention, difficult social/personal circumstances). Drawing on Berg we argue that coronary heart disease (CHD) risk assessment technologies are formal tools that generate, rather than represent, high risk in a way that patients often experience lifestyle change as futile, because it rarely reduces their cholesterol to targets defined by the tools. We suggest social scientists studying incipient or 'proto-diseases', such as CHD risk, should not only focus on understandings but also investigate the technologies (and the associated guidelines, policies, clinical practice and pharmaceutical industry operations) that generate incipient diseases and patients' experiences of them. However, technologies do not determine experience and we also discuss elements that direct patients down other than the pharmaceutical path. © 2011 The Authors. Sociology of Health & Illness © 2011 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

Making sense of being at 'high risk' of coronary heart disease within primary prevention

Current NHS policy advocates screening to identify individuals at ‘high risk’ of cardiovascular disease (CHD) in primary care. This paper utilizes the work of Radley to explore how ‘high risk’ of CHD patients make sense of their new risk status. Results are presented here from a nested qualitative study within a quantitative randomized trial of a CHD risk intervention in primary care. ‘Discovery’ interviews were conducted with ‘high risk’ participants (n=38, mean age=55) two weeks after intervention and thematically analyzed. In response to perceived threat, many participants sought to both ‘minimize’ and ‘normalize’ their risk status. They also reported intentions to act, particularly concerning dietary change and exercise, although less so for smoking amongst the lower SES participants. Such perceptions and intentions were contextualized within the lifecourse of later middle-age, so that both being at risk, and being treated for risk, were normalized as part of growing older. Social position, such as gender and SES, was also implicated. CHD risk interventions should be context-sensitive to the life-course and social position of those who find themselves at ‘high risk’ of CHD in later middle-age

Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia

Policy makers have suggested that information about genetic risk factors, which are associated with low risk and for which preventive strategies exist, should not be considered “exceptional” and should not warrant special safeguards, such as data protection or specialist pre-test counselling. There is scant research on how such risk factors are perceived, and to explore this we conducted qualitative interviews with 42 participants who had undergone testing in the South West of England for a low risk genetic susceptibility to deep vein thrombosis (DVT). Generally the participants, who were mostly women, thought the test was less serious than a genetic test for a predisposition to breast cancer or a non-genetic, diagnostic test for diabetes. They had used the genetic information to reduce their risk of DVTs by avoiding oral contraceptives and hormone replacement therapy but had not changed their lifestyle. Many considered pre-test genetic counselling unnecessary. However, a subgroup of participants, who were often less educated or at a high risk, were distressed and/or confused about thrombophilia and thought pre-test counselling would have been helpful. The findings indicate an emerging interpretation of genetics not as revealing exceptional or “in depth” knowledge about one's health and identity but as occasionally relevant surface information, which participants use to make specific health decisions but not to transform their everyday lives. However, the views of the subgroup indicate that some participants interpret thrombophilia as serious and/or need special support