Healthy citizenship beyond autonomy and discipline: Tactical engagements with genetic testing

Sharon, Tamar

doi:10.1057/biosoc.2014.29

Cited by 32 publications

(29 citation statements)

References 76 publications

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“…Against this promise, critics raise concerns that PHC and self-tracking for health will be disempowering, by heralding a new age of pervasive health (self-)surveillance, and because self-tracking may soon become an obligation imposed by employers, insurers, and societal pressures, more than a voluntary choice. These critics are also appealing to the value of autonomy (Sharon 2015). 4 Here, discourses of empowerment and Bhealthy citizenship^are seen as concealing economic realities that are often detached from the interests of citizens and patients and of creating new forms of discipline, subjection, and social control-of imposing limits on the autonomy of individuals.…”

Section: Of Values and Practicesmentioning

confidence: 99%

Self-Tracking for Health and the Quantified Self: Re-Articulating Autonomy, Solidarity, and Authenticity in an Age of Personalized Healthcare

2016

Self Cite

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Self-tracking devices point to a future in which individuals will be more involved in the management of their health and will generate data that will benefit clinical decision making and research. They have thus attracted enthusiasm from medical and public health professionals as key players in the move toward participatory and personalized healthcare. Critics, however, have begun to articulate a number of broader societal and ethical concerns regarding self-tracking, foregrounding their disciplining, and disempowering effects. This paper has two aims: first, to analyze some of the key promises and concerns that inform this polarized debate. I argue that far from being solely about health outcomes, this debate is very much about fundamental values that are at stake in the move toward personalized healthcare, namely, the values of autonomy, solidarity, and authenticity. The second aim is to provide a framework within which an alternative approach to self-tracking for health can be developed. I suggest that a practice-based approach, which studies how values are enacted in specific practices, can open the way for a new set of theoretical questions. In the last part of the paper, I sketch out how this can work by describing various enactments of autonomy, solidarity, and authenticity among self-trackers in the Quantified Self community. These examples show that shifting attention to practices can render visible alternative and sometimes unexpected enactments of values. Insofar as these may challenge both the promises and concerns in the debate on self-tracking for health, they can lay the groundwork for new conceptual interventions in future research.

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Section: Of Values and Practicesmentioning

confidence: 99%

Self-Tracking for Health and the Quantified Self: Re-Articulating Autonomy, Solidarity, and Authenticity in an Age of Personalized Healthcare

2016

Self Cite

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“…It is in this play with freedom and power, determining and being determined, acting and being acted upon, that different forms of selves emerge, as a result of the relationships they seek to engage in and are engaged by (see Moser ). Here we use heuristics from empirical ethics to analyse how subjects emerge in practice, through relationships amongst people, devices and numbers (Mol , Pols ; , Sharon , Swierstra , Willems , Willems and Pols ). Empirical ethics combines a ‘sociology of the good’ (Thévenot , see also Boltanski and Thévenot ) and a material semiotic approach that does not ‘apply’ theoretical concepts, but studies what these concepts come to be – or how they become enacted – in specific contexts.…”

Section: Approachmentioning

confidence: 99%

“…They boast that, with this personalised knowledge, they will outsmart their doctors: they become the experts on their own bodies. Sharon (: 18) refers to Larry Smarr who diagnosed his Crohn's disease through self‐measurements before his doctors were able to reach the same conclusion.…”

Section: Making Sense Of Numbersmentioning

confidence: 99%

“…The semiotic aesthetes also used results from their self‐tracking to criticise existing norms. Sharon (: 18) describes Dana Greenfield's project about how she mourned her mother after she passed away. Greenfield did not want to mourn ‘by the book’, and instead registered how often she thought about her mother, what triggered that, what mood she was in at that time, and so on.…”

Section: Making Sense Of Numbersmentioning

confidence: 99%

“…Another semiotic‐aesthetic example can be seen in the blog by Nancy Dougherty, who registered how often she smiled in a day (Davis , see also Sharon : 23). Dougherty recorded a higher smile frequency when colleagues approached her, which she interpreted as her liking her colleagues more than she had been aware of.…”

Section: Making Sense Of Numbersmentioning

confidence: 99%

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Making sense with numbers. Unravelling ethico‐psychological subjects in practices of self‐quantification

Pols

Willems

Aanestad

2019

Sociology Health & Illness

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Prevention enthusiasts show great optimism about the potential of health apps to modify peoples’ lifestyles through the tracking and quantification of behaviours and bodily signs. Critical sociologists warn for the disciplining effects of self‐tracking. In this paper we use an empirical ethics approach to study the characteristics and strivings of the various types of ‘ethico‐psychological subjects’ that emerge in practices of self‐quantification by analysing how people and numbers relate in three cases of self‐quantification: in prevention discourse, in testimonies from the quantified self (QS) movement and in empirical work we did with people with Diabetes type I and with ‘every day self‐trackers’. We show that a free subject that needs support to enact its will is crucial to understand the optimism about prevention. In the QS‐movement the concern is with a lack of objective and personalised knowledge about imperceptible processes in the body. These subjects are decentered and multiplied when we trace how numbers in their turn act to make sense of people in our empirical study. We conclude that there are many different types of ethico‐psychological subjects in practices of self‐tracking that need to be explored in order to establish what good these practices of self‐quantification might do.

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Public Understanding of Genetics: The Deficit Model

Marks

2016

Encyclopedia of Life Sciences

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Genetics is relevant to many aspects of our lives. According to the deficit model of public understanding, any misgivings that people have about genetics and its applications are caused by a lack of understanding. Consequently, education in genetics is expected to lead to improved literacy in, and therefore support for, this area. However, studies show that education does not automatically lead to increased public support and that increased knowledge of controversial research may lead to decreased support for it. Understanding is thus a complex and dynamic process which depends on people's prior knowledge and on their social and cultural locations. Members of the public should not be seen as deficient in understanding. Rather, they have sophisticated understandings which should be acknowledged. Public support for genetics cannot be improved simply through more or better education; alternatives such as public engagement in science or institutional changes promoting trustworthiness may be more useful. Key Concepts According to the deficit model, lack of public understanding of genetics leads to an inability to fully participate in social life and potentially lack of support for new technologies. This can be remedied by education. According to critical approaches to public understanding, understanding is a complex process that involves social and cultural factors. Public understanding of genetics is more sophisticated than the deficit model assumes. The idea of lay expertise suggests that people who are not certified scientists may nonetheless have useful and relevant, often experience‐based, knowledge that helps them make sense of science and genetics. Public engagement, where people with different kinds of knowledge and opinions are consulted instead of merely educated, may help improve science–society relations. The deficit model is a sticky concept: it remains popular in some areas of science, policy and science communication despite its shortcomings.

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Healthy citizenship beyond autonomy and discipline: Tactical engagements with genetic testing

Cited by 32 publications

References 76 publications

Self-Tracking for Health and the Quantified Self: Re-Articulating Autonomy, Solidarity, and Authenticity in an Age of Personalized Healthcare

Self-Tracking for Health and the Quantified Self: Re-Articulating Autonomy, Solidarity, and Authenticity in an Age of Personalized Healthcare

Making sense with numbers. Unravelling ethico‐psychological subjects in practices of self‐quantification

Public Understanding of Genetics: The Deficit Model

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