I am doing lots of COVID-related projects and so are many other Australian social researchers.
Here’s a registry of these projects I have compiled – please add yours if it is missing. Registry of Australian Social Research on COVID-19
I am doing lots of COVID-related projects and so are many other Australian social researchers.
Here’s a registry of these projects I have compiled – please add yours if it is missing. Registry of Australian Social Research on COVID-19
Over the past fortnight, I’ve put together a few open-access resources concerning what an initial agenda for COVID-related social research could be and research methods for conducting fieldwork in the COVID world.
Links are below:
Doing Fieldwork in a Pandemic (Google Doc crowd-sourced resource)
Social Research for a COVID and post-COVID World: An Initial Agenda (blog post)
My latest book, Digital Food Cultures, co-edited with Zeena Feldman, has now been published with Routledge, as part of their Critical Food Studies Series. The abstracts and authors of each chapter are listed below. A book preview on Google Books is available here.
This chapter introduces the book and provides a comprehensive overview of previous scholarship on digital food cultures. The five main themes into which the twelve other chapters are grouped are identified: bodies and affects; healthism and spirituality; expertise and influencers; spatiality and politics; and food futures.
No longer defined in opposition to illness, ‘good’ health as representative of lifestyle correction has become a central discourse in international health promotion strategies for many decades. This neoliberal discourse positions the citizen as a consumer, who self-regulates to make the ‘right’ ethical decisions in the management of individual self-care. Social media are key platforms to represent such ‘healthy’ lifestyles through the surveillance of food and consumption practices, as well as other health-related content. Through a critical discourse analysis of semi-structured interviews and guided reflexive diaries, this chapter explores how practices of food and health self-representation on Facebook and Instagram, and through the use of self-tracking apps, enable the performance of a moral ‘healthy’ body and identity, constructed by participants through carefully balanced inclusion and exclusion of ‘healthy’ and ‘good’ versus ‘bad’ or ‘cheat’ foods and lifestyles. The empirical findings explored both the qualitative and quantitative self-representations and practices of self-tracking in managing the body and health. Over time, however, the burdens of tracking health behaviours and the self-regulation promoted by these technologies tied health and lifestyle to ethical parameters of ‘good’ and ‘bad’ behaviours, influencing participants’ sense of wellbeing and mental health.
Food-related content features highly on YouTube. Some genres of YouTube food videos go beyond ‘how-to-cook’ content by focusing on practices of excessive and transgressive preparation or consumption of food: or what I characterise as ‘carnivalesque’ food videos. In this chapter, I take up feminist new materialism theory to examine the ways in which these videos draw on gendered concepts of food and embodiment, and work to generate and circulate powerful affective forces. In my analysis, I present two case studies of carnivalesque food YouTube videos: the ‘cheat day’ videos created by fitness and nutrition influencer Stephanie Buttermore and the cooking videos that feature on the ‘bro’-style Epic Meal Time channel. I contend that the expression and appreciation of excessive food preparation or consumption in these videos offer a way for content creators and their audiences to express and celebrate their longing and desire to indulge in the fantasy of revelling in the sensory delights of forbidden food with no guilt or shame. Simultaneously, however, these videos reproduce sexualised stereotypes of hyper-femininities and hyper-masculinities and surface forceful affective undercurrents of anxiety and ambivalence concerning excessive or ‘wrong’ food consumption, revealing the fraught nature of contemporary digital food cultures.
Food and dietary choices operate as a central mode of identification, a way to define the self in relation to what we consume. These modes of identity are increasingly communicated on Instagram, using digital photography to present the self visually online. In this chapter, we explore the meanings and discourses around ‘clean eating’ on social media. We perform visual content analysis of food images on Instagram to examine the social and cultural meanings of clean eating and food. Drawing upon and developing cultural approaches to social interaction, we employ the concept of the ‘affirmation ritual’ to understand how status and identity are established online. We argue that eating practices and preferences are displayed on Instagram to represent an ideal self to one’s social network. Despite the capacity for user-generated content to resist and reframe social identities, we contend that the curation of clean eating practices on Instagram reinforces the relationship between diet, status, gender and identity.
The digital realm is a crucial site of discourse and meaning construction for vegans. Online forums are popular vegan spaces, where much discussion concerns the supposed health benefits of vegan diets. In this chapter, I take a cultural sociological perspective, which acknowledges food and health as symbolically embedded with significant cultural meanings. Discourses of food and health within a popular vegan discussion forum are analysed and found to significantly align with ‘healthism’, a moral imperative for health.
The idea of eating a particular restricted diet for personal health and wellbeing, or environmental, or ethical and/or religious/cultural reasons, has a long history. Recently, very restrictive eating approaches – such as paleo, clean, and raw diets – have gained traction in and beyond the west. The context for these differs quite radically from previous eras: digital and social media cultures and online modes of dissemination provide an accessible, potentially democratised space in which to present narratives of food, ‘healthy’ eating and the self. Veganism appears regularly in social media, but as a mode of restricted eating potentially occupies a different space. With an interest in the ontological, identity and socio-political work done around such ‘wellness diets,’ we analyse vegan vlogs on YouTube as a digital site of food meaning-making, demonstrating that popular producers – mostly white women – locate their practice primarily within health and wellness discourse, in contrast to more socio-political framings for veganism.
Digital media have enabled amateur food bloggers to make a significant contribution to the gastronomic field in recent decades. As a prominent subset of foodie culture, ‘serious leisure’ food bloggers construct public identities and participate extensively in the discourse around restaurant dining. This participation encroaches on the discursive territory previously occupied by a small number of elite professional food critics, creating a hierarchy of cultural intermediaries in a larger and more contested gastronomic field with diffuse boundaries. While amateurs continue to take cues from professional critics, evidence shows that they apply robust ethical standards in their work. Evidence also demonstrates that they are motivated by passion and enjoyment, rather than being driven by commercial considerations – despite assertions by professionals to the contrary. As such, they may be considered agents and cultural intermediaries in the gastronomic field, alongside professionals. This marks a profound transformation of the field brought about by the proliferation of online and digital media.
In the post-truth era reflected in much of the contemporary media and political landscape, there has been a rise in the number of self-proclaimed health experts, utilising social media to promote their views. Anyone, regardless of their professional background, can occupy this space. As an example, some ‘celebrity chefs’ actively construct and mediate discourses about both ‘good food’ and who should be trusted as authorities on the topics of nutrition and health. While overtly appearing to promote good health, these experts can publicise potentially harmful messages, particularly when their influence in public health debates can surpass that of qualified health practitioners. Australian celebrity chef Pete Evans exemplifies this new development. Best known for his paleo diet advocacy, Evans repeatedly challenges the Australian Dietary Guidelines (NHMRC 2013), seeking to replace them with his own. Using illustrative examples from both Evans’ own Facebook posts, as well as from mainstream media coverage reporting on Evans over a one-year period around the publication of his controversial co-authored book Bubba Yum Yum, we examine the self-construction of expertise in the digital age and discuss the celebrity influencers’ role in the contemporary landscape of mediated food governance.
In this chapter, we examine the food waste blog posts of Sarah Wilson, an Australian anti sugar and domestic food waste avoidance author and campaigner. To date, feminist food studies and food waste studies have neglected the digital representations of food waste and femininity, and in particular, intersections with class, race and whiteness. Our analysis shows how Wilson constructs what we call a foodie-waste femininity that mobilises repertoires of white bourgeois control, discipline and purity through her visual and verbal texts on her blog and her response to a Mail Online article. We show the ways in which Wilson’s foodie waste persona and the scorn it generates is premised on the racialised and classed histories of hygiene and cleanliness and of leftovers as contagious and contaminated, rendering her foodie waste femininity as fragile and unstable.
The local food movement is the target of considerable critique for its failure to include socially excluded groups and individuals who experience systemic barriers to food access in its activities and concerns. Digital applications promoting local food frequently mirror what Prody (2013) refers to as the ‘monocultural rhetoric’ of the movement, which ignores cultural and socioeconomic differences and ethical issues concerning local, and global, food production systems (see also Moore & Swisher, 2015). This chapter presents a case for digital platforms and practices that not only challenge popular local food framings that reflect middle-class values and proclivities but also address wider questions of food justice. I argue that while digital technologies accelerate the capacity of food-sharing ecosystems and other food distribution platforms to contribute to community building and social connectivity, they rarely incorporate the voices of the most food insecure who often experience severe and multiple disadvantage and social exclusion. A better understanding of the relationship between digital and social exclusion can inform the development of technologies that build the capacity of food insecure individuals to develop connectedness and engage in the co-creation of participatory foodscapes in their communities.
Food consumption has long formed an important part of community making and this is apparent also within the development of digital food cultures. This chapter provides a specific case example of urban regeneration set within the region of South London, demonstrating how digital identities and practices infiltrate the market space. In the chapter, I reflect on some of the problems that arise in the popularising of alternative food networks and their role in the reconstruction of community-based forms of consumption. I interrogate in particular the urban investments of new networks and market spaces and consider how they impact on community-based food consumption. Reflecting on how the language and aesthetics of social media provide a new frame for ‘visioning’ food and community, my discussion also considers how network imaginaries contribute to local planning and policy-making strategies and the wider implications these have for the future of food and community.
Over the past few years, a new breed of digital food technologies has emerged. Utilising interconnected sensors, photo recognition, machine learning and artificial intelligence, these technologies provide so-called smart recommendations on eating right based on perceived individual needs. Using critical content analysis, this chapter analyses the ways in which three digital technology businesses present themselves and their offerings online. In so doing, we examine their marketing materials, such as websites, to unpack the underlying assumptions of their creators and the projected relationship between digital food technologies and healthy eating. The findings show that the business logic of digital food technologies induces servitisation of the human body through constant flow of food data. This logic favours and promotes an understanding of the human body as an entity that could be optimised through perceptively accurate nutritional data and standardised food. How this in turn prescribes highly personalised and controlled eating practices is discussed.
From cooking, shopping, and growing to dining and dieting, digital technology has become a frequent companion of our day-to-day food practices. The diversity of products and services available on the food-tech market is broad, ranging from smart kitchenware to diet tracking apps and ‘biohacked’ food products. Investments in food-technology innovation are led by the corporate sector of Silicon Valley ‘foodpreneurs’ who started designing solutions for everyday food problems as well as complex food system issues. These food-tech solutions present opportunities for efficient food practices but also challenges to existing sociocultural frameworks of food production and consumption. In this chapter, I illustrate such contradictions through the example of Complete Foods — a powder-based food replacement originating from the Silicon Valley startup realm that enables quantified data-driven control over one’s diet. I discuss my three-year ethnographic study of the Complete Foods community and outline the risks and opportunities that the diet presents to day-to-day lives of its members. I frame my findings within the Silicon Valley food-tech innovation context.
Most social analyses of the use of personal health data for dataveillance (watching and monitoring people using information gathered about them) have largely focused on people who engage in voluntary self-tracking to promote or manage their health and fitness. With the outbreak of COVID-19 (novel coronavirus), a new form of health dataveillance has emerged. I call it ‘digitised quarantine’.
Traditional quarantine measures, involving the physical isolation of people deemed to be infected with a contagious illness or those who have had close contact with infected people, have been employed for centuries as a disease control measure. Histories of medicine and public health outline that quarantine (from the Italian for ’40 days’ – often the length of the isolation period) was practised as early as the 14th century as a way of protecting people living in European coastal cities from the plague brought by visiting ships.
With the advent of COVID-19, quarantine has been actively used in many of the locations that have experienced large numbers of cases. Millions of people have already been placed in isolation. Quarantine measures have included self-isolation, involving people keeping themselves at home for the required 14-day period, as well as imposed isolation, such as requiring people to stay in dedicated quarantine stations, and large-scale travel bans and lock-downs of whole large cities. Quarantine began with lock-downs of Wuhan and nearby cities in the Chinese province of Hubei. At the time of writing, cases have been discovered in many other countries, often with identified hot-spots of contagion around identifiable places and regions, including a South Korean church, a north Italian region and a cruise ship docked in Japan.
Side-by-side with these centuries-old measures, in some locations, digital technologies and digital data analytics have been taken up as ways of monitoring people, identifying those who are infected and tracking their movements to ensure that they adhere to self-isolation restrictions for the length of the quarantine period. In China, people were prevented from leaving their homes if they had been identified as infected with COVID-19 by a digitised rating system on a phone app that coded them ‘red’. Chinese government agencies also released a ‘close contact detector’ app that alerted people if they had been in close proximity to someone infected with the virus. In some Chinese cities, local government authorities have brought in monitoring measures using facial recognition data and smartphone data tracking combined with information derived by requesting people to enter details about their health and travel history into online forms when visiting public places.
It is not only Chinese authorities who are experimenting with digitised forms of identifying infection risk and enforcing isolation. In the Australian city of Adelaide, two people identified as having COVID-19 were placed under voluntary home isolation, their movements monitored by the police using their smartphone metadata. It is notable that the police emphasised that this is the same dataveillance system used for tracking offenders in criminal investigations. As is the case with traditional quarantine measures, the freedoms and autonomy of those deemed to be infected or at risk of infection are in tension with public health goals to control epidemics. The types of digitised monitoring of people’s movements using their smartphones or enforced notifications to complete online questionnaires are redolent of the measures that are used in the criminal justice system, where employing electronic monitoring technologies such as digital tracking bands has been a feature of controlling offenders’ movements once released from a custodial sentence.
These resonances with law enforcement should perhaps not be surprising, given that public health acts in many countries allow for the enforced isolation or even imposing significant fines or incarceration of people deemed to pose a risk to others because they are infectious or identified as being in a high-risk category of transmitting disease. There is a recent history of countries such as Singapore using technologies such as surveillance cameras and electronic tags for controlling the spread of SARS in 2003. These practices have been called into question by scholars interested in investigating the implications for human rights.
Since then, the opportunities to conduct close monitoring of people using their smartphones and online interactions have vastly expanded. The use of detailed data sets generated from diverse sources in these novel digitised quarantine measures leads to a range of new human rights challenges. Such monitoring may be viewed as a ‘soft’ form of policing infection, in which physical isolation measures are combined with dataveillance. However, underlying the apparent convenience offered by digitised quarantine are significant failures. One difficulty is the potential for the data sets and algorithmic processing used to calculate COVID-19 infection risk to be inaccurate, unfairly confining people to isolation and allowing them no opportunity to challenge the decision made by the app. Examples of such inaccuracies have already been reported by Chinese citizens subjected to these measures. As one man claimed: “I felt I was at the mercy of big data,” … “I couldn’t go anywhere. There’s no one I could turn to for help, except answer bots.”
At a broader level, another problem raised by digitised quarantine measures is the ever-expanding reach into people’s private lives and movements by health authorities and other government agencies that they portend. This function creep requires sustained examination for its implications for human rights. The data-utopian visions promoted by those seeking to impose digitised quarantine may well lead to data hubris when their inaccuracies, biases and injustices are exposed.
Acknowledgement: Thanks to Trent Yarby for alerting me to two of the news stories upon which I drew for this post.
Lupton, D. (2019) The Australian Woman and Digital Health Project: Comprehensive Report of Findings. Canberra: News & Media Research Centre.
There has been a lot of interest in self-tracking and the quantified self over the past half decade or so. My book The Quantified Self set out to present a sociological perspective on self-tracking using a predominantly Foucauldian analysis. In the book, I examined the potential implications for understanding selfhood, identity and embodiment using metricised and digitised self-monitoring practices.
I have noticed that I am often referred by other scholars writing about the sociocultural dimensions of self-tracking as someone who predominantly theorises about these practices rather than actually investigating how people are engaging in self-tracking. I find this perplexing, because since The Quantified Self came out, I have published the findings of several empirical studies on self-trackers’ practices, including research with women who use pregnancy or infant monitoring apps, cyclists and people who track aspects of their lives such as their food intake, fitness levels, finances and social relationships.
In this research, I have sought to combine social theory (and especially that from vital materialism scholarship) with my findings. Some of this research is discussed in my new book Data Selves, designed to complement The Quantified Self. There are also numerous book chapters and journal articles that have now been published from these studies. They are as follows:
My new book Data Selves: More-than-Human Perspectives has now been released by Polity Press. In the book, I draw on feminist new materialism theory and the anthropology of material culture as well as analyses of popular culture and findings from my empirical studies talking to people about their personal data. I argue that personal data are more-than-human phenomena, invested with diverse forms of vitalities, and reveal the significant implications for data futures, politics and ethics. The book is a companion to my previous Polity book The Quantified Self: A Sociology of Self-Tracking.
VITALITIES LAB NEWSLETTER
Number 5, 11 September 2019
The Vitalities Lab is led by SHARP Professor Deborah Lupton, Centre for Social Research in Health and Social Policy Research Centre, UNSW Sydney. Team members are Dr Ashleigh Watson and Dr Clare Southerton. Further details here.
19 July: Ashleigh convened ‘Affect, Knowledge and Embodiment: A Critical Feminist Arts/Research Workshop’ at the Griffith Centre for Social and Cultural Research, Griffith University, Brisbane, with Dr Laura Rodriguez Castro (Griffith) and Sam Trayhurn (WSU). Information about the workshop and copies of the zine can be found here.
14 August: Deborah gave an invited seminar presentation on her digital health research for the School of Public Health & Community Medicine, UNSW Sydney.
14 August: Deborah gave an invited lecture and a workshop, both on using social theory in a thesis, for the Arts & Social Sciences HDR student conference, UNSW Sydney.
19 August: Deborah gave an invited presentation to the UNSW Sydney Pioneers alumni association about her research on digital health.
5 September: Clare gave a presentation on her chapter (co-authored with Miranda Bruce) about intimacies and the impersonal in ‘Black Mirror’, published in the edited volume Social Beings, Future Belongings (Routledge) at the book launch, ANU, Canberra. Her presentation and others at the launch can be viewed here.
9 September: Ashleigh ran a zine-making workshop at the Vitalities Lab on the theme of ‘algorithmic micropolitics’. A blog post about the workshop and the zine itself that was collaboratively made by participants can be found here.
10 September: Deborah gave an invited presentation at the ‘Bioethics Colloquium’, convened by UNSW and the South East Sydney Local Health District Clinical Ethics Service
Call for submissions: So Fi Zine
Ashleigh has launched the call for submissions for So Fi Zine edition #6 – So Fi Zine is a sociological fiction zine for arts-based research, creative sociology, and art inspired by social science. The zine publishes short stories, poetry, photography, photo essays, cartoons, and other creative works. Edition #6 will be published in November 2019 and is inspired by Deborah Lupton’s digital, creative, more-than-human and future oriented research. Pieces are invited that creatively explore sociological futures: bodies, spaces, disciplines and things. Submission info and previous edition of the zine can be found here.
My new book Data Selves: More-than-Human Perspectives is due for publication next month. Below is an edited excerpt from the Introduction chapter, in which I explain my theoretical approach.
The phenomenon of personal digital data poses a challenge at an ontological level. Personal data blur and challenge many of the binary oppositions and cultural boundaries that dominate in contemporary western societies. Personal data are both private and public. They could be considered to be owned by, and part of, the people who have generated them, but these details are also accessed and used by a multitude of other actors and agencies. At a deeper level, personal data challenge the ontological boundaries between the binary oppositions of Self/Other, nature/culture, human/nonhuman, and living/dead. Discussions of how digital data about and for people are incorporated into everyday lives must therefore grapple with the problem of how we conceptualise the idea of ‘the human’ and life’ in relation to the digital data that are generated by and for humans. Because digital data are associated with non-human entities such as digital devices and software, and because they are often viewed as non-material entities, they are often de-humanised and de-materialised in discourses. The oft-used term ‘big data’, for example, tends to portray large digital datasets as de-personalised and anonymous, even though these datasets are often comprised of very intimate and sensitive details about people and their lives. Alternatively, explanations of how people collect and make sense of their own data are often reduced to individualised models of cognition or behavioural psychology, removing the sociocultural, sensory and affective dimensions of how people generate and respond to these details about themselves …
In what follows, I examine the interplay of human and nonhuman affordances associated with digital technologies – devices, software and the digital data they generate – and the agential capacities that are opened up or closed off as these things assemble. I ponder the questions of who benefits from these agential capacities, and in whose interests they operate. Here again, affective forces are central to the engagements of humans with these nonhuman things and the capacities that are generated by their gatherings. I address how human-data assemblages can generate agential capacities that empower and vitalise actors in the assemblage; but can also expose them to vulnerabilities and harms.
This approach recognises the entanglements of personal digital data assemblages with human action, reaction and understanding of the world. Personal digital data assemblages are partly comprised of information about human action, but their materialisations are also the products of human action, and these materialisations can influence future human action. While digital data assemblages are often conceptualised as immaterial, invisible and intangible, I contend that they are things that are generated in and through material devices (smartphones, computers, sensors), stored in material archives (data repositories), materialised in a range of formats that invite human sensory responses and have material effects on human bodies (documenting and having recursive effects on human flesh). The primary analytical focus is understanding what personal data assemblages allow bodies to do, and how they come to matter in people’s lives.
Feminist new materialism also calls into question and problematises how we might define and materialise personal data. While the literatures on datafication and dataveillance tend to assume that personal data are digital artefacts that are primarily materialised in two-dimensional visual formats as the outcomes of humans’ encounters with digital technologies, an emergent body of scholarship in what has been termed ‘posthuman’ or ‘post-qualitative’ inquiry (Lather and St. Pierre 2013; MacLure 2013) contends that data about humans can be any kind of matter, both organic and inorganic. Human flesh, bones, tissue, blood, breath, sweat or tears, human sensory and affective responses and reactions, objects that people use as part of their mundane routines, or artworks and creative writing outputs, for example, are among the materialisations of and participants in human experience that can be viewed and treated analytically as ‘data’ (Koro-Ljungberg et al. 2017; Taylor et al. 2018).
Drawing on this perspective, I argue that examining the multitude of media (loosely defined) that are used to represent personal data, including arts-based and three-dimensional approaches, is one way of working towards a different way of thinking about their onto-ethico-epistemological aspects. Expanding the definition of what materials can be treated as personal data works to highlight the performative, embodied, multisensory, affective and agential dimensions of human-data assemblages. Not only does this perspective acknowledge the more-than-human worlds of personal data, it also highlights the more-than-digital dimensions of these assemblages.
In this book, I take up calls by Barad (in Dolphijn and Van der Tuin 2012) and Braidotti (2018) for a critical posthuman studies that incorporates an affirmative ethics. For Braidotti (2018), the mutable and distributed nature of human agency offers a politics that is able to challenge current fears and preoccupations. Cartographies of power relations and their associated entitlements, agencies and capacities can provide detailed ways of thinking through and with political practices and subjectivities. They help to think differently about figurations of human action, belief and practice, their implications, boundaries and limitations, and how new modes of being and acting can be configured and political change effected.
Central to my argument is that in the face of the continuing de-personalisation and de-humanisation of details about people’s bodies and lives that have been rendered into digital data, a new onto-ethico-epistemological position should be developed that reinvests human-data assemblages with different meanings and reconceptualises what we mean by ‘personal data’ – and indeed, how we think about and treat our ‘data selves’. In so doing, we can begin to think more seriously and deeply about what is at stake when human-data assemblages are de-personalised and de-humanised. If these new ways of thinking are taken up, they have significant that go to the core of selfhood, social relations and embodiment as they are enacted in more-than-human worlds.
In making my argument in the pages of this book, I seek to engage in what Barad (2007) refers to as ‘diffractive methodology’, which attempts to work with different bodies of research and theory to generate new insights. As she notes, it is the diffractive patterns of resonances and dissonances that make entanglements of matter and meaning visible. For Barad, diffractive thinking goes beyond critique to ethical engagements, involving reading insights through one another: ‘Diffractive readings bring inventive provocations; they are good to think with’ (Barad in Dolphijn and Van der Tuin 2012: 50). In the spirit of a diffractive approach, this book’s content is intentionally interdisciplinary and eclectic. While I work principally with feminist new materialism theory, relevant perspectives offered from scholarship in the anthropology of material culture, digital sociology, media studies, internet studies, cultural studies, information studies, archival studies, human-computer interaction studies, education, archaeology and cultural geography are also included.
Chapter 2 provides an overview of these perspectives and begins to explore how they might be taken up to theorise the more-than-human worlds of human-data assemblages. In Chapter 3, I address the ways in which personal data as a phenomenon is materialised in words, images and three-dimensional representations, including provocations and interventions from design- and arts-based approaches that offer alternative ways of thinking about personal data. In Chapters 4 and 5, I draw on empirical material from several research projects I have conducted since 2015 to provide insights into how people conceptualise and live their personal data (details of these projects are provided in the Appendix.) Chapter 4 discusses how people enact and make sense of their personal data and identifies the relational connections, affective forces and agential capacities generated by doing data. Chapter 5 reviews the ways in which the tension between the sharing ethos of participatory digital media and the dystopian imaginaries that circulate concerning the ‘internet knowing too much’ about people are dealt with in everyday data concepts and practices. In the Final Thoughts section, I present my vision for how a new ethics of caring about and living with our data selves might be developed.
In June 2019, I took part in an ‘in conversation’ event at King’s College London, organised by the Social Science & Urban Public Health Institute. The conversation was transcribed and published on the Institute’s website. They have kindly given permission for me to repost the content here. Thank you to Benjamin Henckel and Shayda Kashef for their work on this event and the post.
On 13th June 2019 the Social Science & Urban Public Health Institute (SUPHI) at King’s College London hosted a special in-conversation event with Professor Deborah Lupton. During the event Professor Lupton discussed her forthcoming book Data Selves, and reflected on the role that digital technologies are playing in the urban public health landscape.
Below is an edited version of the transcript from the event. Special thanks to sponsor, PLuS Alliance.
By Benjamin Hanckel and Shayda Kashef
What is digital health and where do you see the field at now?
Digital health is a short, snappy title to refer to the huge range of digital technologies that are used to apply to health, right through from older technologies such as websites, search engines, online discussion forums, through to things like 3D printing of body parts and apps and all those kinds of digital technologies that are quite new on the scene. So I think digital health for me encompasses that diverse range of ways that certain forms of healthcare and health communication can be digitised. And given that there are more and more of these technologies emerging, there’s never something I have to wonder writing about because there’s always something new on the horizon and it’s really interesting to trace their trajectory and find how older technologies are often forgotten about. Google search is probably the number one most highly used digital health technology because people use it as a form of self-triage, and it’s interesting to me how those older technologies are often forgotten about in the rush and the excitement of the social imaginaries that represent newer technologies, such as apps and wearable devices, which is the brave new world of healthcare. People are often still getting much more value from websites and online discussion forums, for example, than they are getting from health apps.
Putting this in the context of your current work, can you tell us about the Vitalities Lab you set up at the University of New South Wales and how it relates to digital health?
I’ve been building on my previous interest in Foucauldian theory now to incorporate some perspectives from new materialisms and particularly feminist new materialisms and vital materialisms, as there’s an overlap between those two materialisms but they aren’t the same thing. I’ve only been at the University of New South Wales for four months but as part of my appointment I was encouraged to set up a research team. The name Vitalities is meant to denote the kinds of directions and interests that I have at the moment. So to begin with I’ve been writing a lot about ‘lively data’ over the past few years and that means people’s personal data and about the digital data economy and how digital data about people take on value. They are lively because people engage with data about their bodies and themselves in ways that synergistically change their own lives, they may respond to their own data and change aspects of their lives based on what their data are telling them. So that’s the notion of lively data.
Vital materialism gets back to that idea of vitalities as well. So, some of the feminist new materialism scholarship that I’ve been engaging with, particularly the work of Karen Barad, Jane Bennett, Donna Haraway and Rosi Braidotti, talk a lot about capacities and affective forces, and how they are generated through interactions that people have with other humans and with non-human actors. It’s very much this idea that there are capacities that are generated when people come together with other people, with non-humans, which I’m trying to explore in my recent research, of course within particular digital technologies, how people engage with their digital devices but also their data to generate new capacities. So that gets back to that vitality as well, there are these capacities constantly being generated and reformed and reconfigured with and through devices and data.
Can you expand on how ‘vitalities’ might contribute to new ways of thinking about methods and methodological enquiry?
In terms of theoretical methods, there’s a sort of emerging approach to qualitative empirical research, post-qualitative inquiry, that I’ve also found really interesting to work with lately. And there’s a very strong overlap of post-qualitative inquiry with more than human theory, because post-qualitative inquiry sees research as always being a research assemblage, as always being partially emergent and sort of going away from the very positivist approach to qualitative approaches which have dominated a lot of health related qualitative enquiry of late. Every type of research is always a research assemblage: the researcher is always part of the data that they generate. So that’s where post-qualitative research departs from the more positivist approach to qualitative research. It’s interesting how the more than human theory is now being brought into research methods: and that’s what I’m trying to do with the kind of work that I’m doing recently, when I’m writing up my own empirical research and analysing it to bring in post-qualitative perspectives as well as the more than human theory that I’m trying to think with when I’m generating concepts that I’m using to analyse my empirical data. So the empirical data might include traditional forms of data such as interview transcripts, or focus group transcripts, but with post-qualitative methods they often now include arts-based materials, drawings, storyboards that people might have made in workshops. I’ve been experimenting with a method called story completion recently, which involves people finishing stories that we start for them and then inviting them to create the narrative, which is another form of research material that I think can be quite interesting to use as a way of understanding people’s experiences. So that’s been a really new method that I’ve been experimenting with as another way of accessing people’s feelings and experiences in ways that they themselves might find hard to articulate if we’re just asking them in an interview to articulate. Because often they’re such mundane experiences for people that coming at it from a more oblique way or a more sort of creative way can be an interesting way to access those kinds of experiences and fears.
Can you expand on how you have engaged with some of these themes in your most recent work, and in particular in your forthcoming book Data Selves?
Data Selves covers what I call ‘living data’ and it gets back to the lively data I was talking about earlier, but also how people live with and through and alongside their personal data. In Data SelvesI’m really trying to expand on feminist new materialism, human data assemblages ideas, and I argue that people’s personal data are often represented in dematerialised and depersonalised ways, such as when we talk about the big data phenomenon, the data tsunami and being overwhelmed by data. And we often forget that not all data that are generated by, for example smart cities or by any other form of data generation, are about non-humans. But a lot of those data are about actual humans, about their lives, about their bodily practices and habits and routines.
With Data Selves, as the title suggests, I wanted to bring in that more than human, non-human aspect and to understand data human assemblages as all human assemblages, and bring in that humanity and re-humanise this core data. And for me that raises a different form of ethics around those data. I’m arguing that we should think of personal data in similar ways, as sort of embodied, human, not fleshy but they’re kind of about our flesh, that sort of ambiguous ontology. So I would argue that we need to think of them in certain ways like we think of other body parts and other body attributes that people donate or give or sell in some situations as very much human remains, and I’m arguing that that’s how we should treat people’s personal data, and that raises questions about the ethics of how other people might use those data and seek to profit from those data.
In the book I draw on a few of my empirical research projects, which do talk about people, about how they engage with and make sense of their data, and I’m arguing that we need to understand people’s engagements with their data as very often infused with affect, vulnerabilities, multi-sensory engagement. So there’s actually a chapter on what I call materialisations of data, when I talk about social imaginaries of data, the very utopian ideas of data as being very productive and generative, and how people themselves can benefit from their own data. So there’s that very positive representation. Then what’s interesting that over the past few years though, when talking about people’s personal data there’s this very dystopian representation of data that privacy no longer exists. So you’ve got really interesting polar representations of how people’s data can be used in both positive and negative ways.
I did a project which I called the Data Personas Project and that built on the design methods approach, personas. I called it their data persona, or a profile of you that’s made about details about you from your online and app related encounters and engagements. And then I asked people to imagine the futures of their data persona, because I think there’s a lot of interesting and intriguing ways we can think about inviting people to imagine futures, rather than having futures imagined for them, on behalf of them by others. I also asked them how similar or different is your data persona from you? Some people did imagine a dystopian idea whereby nothing is private, you know, the internet knows everything about me, but most people said the internet doesn’t know everything about me, it doesn’t know my internal beliefs and feelings, and so on. So I thought that was really interesting because we also get this discourse in media studies in particular and surveillance studies which is very critical of the idea that people think privacy is dead and they’re not concerned about their privacy, you know, the privacy paradox, so yes, people say “I’m worried about my privacy” but they don’t do anything to actually protect their privacy. But that research that I did using the data persona concept kind of shows that people don’t think that their privacy has been completely taken over by the internet.
There is an ongoing debate about data capture for the common good, versus data capture that is perceived as morally questionable. How might we think about these boundaries?
I try to avoid a really normative approach to these kinds of ethical discussions. The context is everything. And people’s contexts are so variable and unique to them, that’s what really comes out when you look at the ways that people engage with digital technologies and digital data. If you look at the Association of Internet Researchers document on ethics around doing research with online materials, it’s really interesting because they argue that you have to look at the context for each research project. There shouldn’t be hard and fast guidelines about how social research is used when we’re talking about using people’s personal data. More recently, human ethics committees have become far more aware of that, as people might be putting their information out there when they go online, so it’s become a more complicated situation now. It’s not as easy to get ethics approval and you do actually have to argue for why and how you’ll get those people’s consent or if you don’t, why not and so on, so it’s become far more complicated. All I would say is that there needs to be these very detailed, lengthy considerations about the context.
But all those issues around whether people know that you’re accessing their data, to what extent, now there’s the issue now with de-anonymisation too, Because if you know what you’re doing, data harvesters can be really good at de-anonymising data to generate detailed profiles about people.
But even when a decision is made about if it is appropriate to generate these data and what to use people’s data for, because it might improve public health or improve treatment for medical conditions, really strong data privacies and security measures can be leaked or breached or hacked. So you don’t know what the future of those lively data might be, so that’s very difficult.
The event concluded with a brief Q&A session with the audience which covered a range of issues, including: