Category Archives: Uncategorized

More on our new book Living Data

Does biosensing increase people’s control over their health, as it is often claimed? What is the connection between more data and health? Who is biosensing who? What is the relation between biosensing and people’s anxieties about their health? How do people subvert or reinvent biosensors to assure themselves of health? How does biosensing participate in making certain forms of selfhood and group viable? What socio-material networks do biosensing practices produce and rely on? Who is profiting from biosensing and who is not, and how? What new forms of work and care are produced in biosensing? How does the dream of continuous monitoring animate biosensing? How might collectives or communities thrive through biosensing? What, if any, policy framework might meet public concerns about health biosensors?

In the book ‘Living Data: Making Sense of Health Biosensing’, we offer some ways of responding to this panoply of questions and perhaps framing some new ones. We discuss a range of biosensors and biosensings, testing the boundaries of the technical definitions of biosensor in order to access emerging configurations and experiences that we consider relevant.

We want to make sense of areas of health – fertility, stress, genetic susceptibility, and ageing – that concern people’s sense of self, their sense of individual and collective agency, and their capacity to practically engage with the problems and potentials of their health. Each of the biosensing practices that we explore has power-lade regulatory, economic and epistemic facets, sometimes reaching deep into the institutions and experiences of gender, kinship, ageing, citizenship and ethnicity. Each has deep temporal structures within life-worlds. Each permeates embodies senses of selfhood and relationality.  

In the book, we offer an understanding of biosensors as ‘layers of biosensing practice’. First, this means that biosensors are impossible to find in isolation. Like tools or bodies, they always belong severally to a collective or an assemblage. A fertility monitor, which could be a worn basal body thermometer, might be linked to a mobile phone app, a team of remote experts accessing a database of readings and an analytics interface, and an online discussion forum. None of these elements, not even the biosensing device ifself, is straightforward. It is not particularly useful, therefore, to regard biosensors as technologies in the sense of the engineering application of science to practical problems. Much of biosensing concerns what happens to the data, how they are understood, and how they interact with or escape other forms of knowledge and expertise. As we argue in the book, biosensors increasingly operate within platform environments in which problems of regulation, property, ethics, inclusion and control are writ large for self and other, for individual and collective, for citizen, customer, corporation and state.

Second, biosensing faces difficulties rooted deeply in health. Doctors and scientists, among other people, measure physiological states from time to time, such as temperatures or blood hormone levels. These are routinely understood as measurable signs of health. However, no exactness, comprehensiveness or sheer volume of physiological data can exhaust the existential inexactness of health. Experience of health or illness, even a life with chronic illness or disability, has no fixed constant, exact parameters or laws. The experiences of health may well diverge from physiological ‘constants’ or averages derived from accumulated measurements (usually of populations).

Third, bodies are so plurally entangled in the world that it sometimes hardly makes sense to speak of them as separate from an environment. The indeterminacy of body-environments cascades difficulties for the biosensors. Devices have to be coordinated with each other. Their results or indications have to be analysed, interpreted and re-situated amid experiences of health and disease, as well as programmes of action and different forms of expertise and judgment. The devices become products not in their own right, but within arrangements that depend on groups and communities of practice, especially in the form of platforms such as social media. Platforms, institutions, social groups and modes of knowledge are just some of the different facets that unfold around the devices, even if the devices often seem to be increasingly, sometimes disconcertingly, autonomous.

We have no simple way of conceptualing the diversity of biosensing practice because the lives that they pertain to, actually and potentially, are inherently diverse and indeterminate. This is not to say that biosensors and biosensing practices thwart normalisation. Biosensing often acts normatively; that is, acts to intensify existing norms defined by biopolitical and neoliberal governmentality with its population measures and controls. Even as they normalise bodies and experiences, biosensing practices that count or record some state of activity can diverge greatly from coordinated programmes of action executed more or less coherently by institutions or large organisations such as health-care providers or hospitals. A platform designed and constructed to gather, aggregate and circulate biosensing data, such as the online ovulation monitoring systems or the social media-enabled DNA genotyping services we discuss in the book, differ greatly from the clinical settings in which such biosensing might otherwise take place, creating niches in the broader formations of biomedicalization, normal and pathological, and disease and health.

In the book chapters, we discuss some of the emergences of biosensing in detail, but we have also create a table that serves to highlight the very different ecologies of biosensing, and to highlight the need for broad lines of questioning and re-conceptualisation of biosensors in which frequently used terms such as ‘health’, ‘device’, ‘body’ and ‘data’ are not treated as single or static concepts, but figured as plural and contingent.

  Fitness Self-Health Biomedical Social Care Environmental
What is measured? Steps, cycling Sleeping, stress Genetic risk, blood sugar, weight Falls, enuresis Air, water, mercury
What are users supposed to do? Count, do more, do less Map, chart, analysis Test, monitor, contribute data, access clinics Accept monitoring, trigger care Count, record, aggregate
Devices and Platforms Wearable, social media Wearable, social media Lab instrument, social media Wearable, fixed sensors, call centre Fixed sensor, apps
Role of Groups Optional, competition Optional, comparison, social group Population, cohort Client/customer service, relatives Community group, social movement
Institutional Proximity low low medium high Medium
Relevant Knowledges Sport science, exercise physiology, military Psychology, women’s health movement, military Life sciences, genomics, reproductive medicine Gerontology, physiology, health economics, public health Ecology, toxicology, hydrology

Living Data: Making Sense of Health Biosensing is published by Bristol University Press. Go to their website for a copy of the book. 


Our book ‘Living Data: Making Sense of Health Biosensing‘ has been published (July 24 2019) with Policy Press (Bristol University Press).

As individuals increasingly seek ways of accessing, understanding and sharing data about their own bodies, this book offers a critique of the popular claim that ‘more information’ equates to ‘better health’. In a study that redefines the public, academic and policy related debates around health, bodies, information and data, the authors consider the ways in which the phenomenon of self-diagnosis has created alternative worlds of knowledge and practises which are often at odds with professional medical advice. With a focus on data that concerns significant life changes, this book explores the potential challenges related to people’s changing relationships with traditional health systems as access to, and control over data shifts.


Guest seminar with Dawn Nafus, Lancaster University 15th Oct. 2015

All welcome!

Getting Out of the Clouds: What the Quantified Self Community and Anthropologists have in Common

 Dawn Nafus, Intel Labs


Thursday 15th October 2015, 3.30 – 5.00pm

Location: County South D72, Lancaster University

This talk will examine practices of enumeration within the Quantified Self (QS) community. Quantified Self is a group of people who keep track of their bodies in some way, and share what they found with others. In a sense, both anthropologists and QS share the same problem: they are both concerned that contextual, embodied knowledges risk being left by the wayside in the urge to aggregate data across populations.

Recent discussion in the QS community has focused on the possibility of “turning the evidence pyramid on its head.” Members of the community have called for moving away from randomized controlled trials as the only form of knowledge-making, and towards self-experimentation as a form of different, but equally valid scientific evidence-making. This reversal re-introduces situated knowledge in fascinating ways. It opens up questions about how relations between the one and the many might unfold in a data-rich, sensor-rich setting—a setting in which situated knowledges might be valued more than god tricks, and data in one’s hand is not merely on its way to the cloud.

I will explore what this reversal could mean through both my ethnographic research in the QS community, and by unpacking the design process behind Data Sense, a software project which attempted to elaborate, in material form, the ethnomathematical underpinnings of self-tracking data exploration.

Dawn Nafus is a senior research scientist at Intel Labs, where she conducts anthropological research to inspire new products and services. She has published widely on experiences of time, gender and technology, ethnography in industry, and most recently quantification. Her edited volume on Biosensors in Everyday Life will be published in 2016 with MIT Press. She holds a PhD from the University of Cambridge.

23andMe in Oxford

Thursday this week (April 16th), I attended a public meeting in Oxford hosted by Prof Peter Donnelly, Director of Wellcome Trust Centre for Human Genetics. He had invited 23andMe’s CEO Anne Wojcicki for a talk about personal genomics. The “town hall” style meeting took place at the Sheldonian Theatre, a historic grade 1 listed building in Oxford. The event was attended by 300+ people.

After an introduction from Peter Donnelly, Anne Wojcicki gave a brief talk that started with the question: “Who is in charge of your health?”, and she went on to tell the Wall Street story of why she got into personal genomics. The question of who owns your health data has been a concern of hers since her Wall Street days, she explained. If you’ve followed the 23andMe debate and seen some of the videos floating around on the web of Anne giving talks, you will also know that she repeatedly proclaims: “You own your own data”. But what does that mean when 23andMe’s terms of service state:

‘by providing any sample, having your Genetic Information processed, accessing your Genetic Information, or providing Self-Reported Information, you acquire no rights in any research or commercial products that may be developed by 23andMe or its collaborating partners’

and when its privacy statement says:

‘If you do not give consent for your Genetic and Self-Reported Information to be used in 23andWe Research or your individual-level Genetic and Self-Reported Information to be used in the Research Portal, we may still use your Genetic and/or Self-Reported Information for R&D purposes as described above, which may include disclosure of Aggregated Genetic and Self-Reported Information to third-party non-profit and/or commercial research partners who will not publish that information in a peer-reviewed scientific journal’.

The company’s mission statement was also put on a slide: “To help people access, understand and benefit from the human genome”. 23andMe offers genetic testing ‘direct-to-consumer’ which is their version of access; they educate consumers as well as physicians about genetics to make them understand; and they promise to make more general information about diet and exercise (typical lifestyle advice) more meaningful with genetics.

Anne also touched on 23andMe’s vision of making breakthroughs in medicine with their version of genetics research, and its newly launched ‘23andMe Therapeutics’ is the latest attempt at doing that. She explained that they want to use “that good world energy” to do research that will produce “really meaningful insights” – insights useful for drug discovery.

Anne’s talk was followed by questions from Peter Donnelly who started off by asking what 23andMe is doing to educate their customers about genetics. He also asked about the FDA (Food and Drug Administration) that in November 2013 had asked 23andMe to stop returning disease risk reports as part of their “Personal Genome Service”. 23andMe is now working with the FDA to get their tests authorised. In regards to their re-launch into the UK market (in Dec. 2014), the company have had their “Personal Genome Service” CE marked, which means that the product meets the necessary requirements of the European Commission directives. “We’ve learned from the past”, Anne said. “We’ve talked to the regulators”. The topic of 23andMe’s collaborations with pharmaceutical companies also came up. Earlier this year, 23andMe announced that they will be collaborating with the companies Genentech and Pfizer. “We might not like all what they do but we have to work with them”. “Drugs don’t appear on their own”, Anne said. And “we try really hard to be transparent”. 23andMe also wants to collaborate with other groups such as NICE (National Institute of Health and Care Excellence) in the UK. “I am a fan of NICE”, Anne said. She talked about how to identify which drugs work on which population. “How can we make the job of NICE easier?”, she added. The goal would be “true population-personalised health”.

From the audience, there were a few questions about the future of 23andMe, for example, whether the company would move into wearable technology. “At some point”, Anne said, wearable technology might be something to consider. She mentioned that it might help collect the necessary phenotypic data, as would GPS technologies and mobile phones. But she also said that at the moment, the challenge is that “there is so much data”. “How about in 30 years time?”, another member from the audience asked. In addition of “fashionable wearables”, it could include other “interesting ways of measuring what is going on in your body”, Anne responded.

Another question from the audience was about the volume of data that the customer gets back, here referring to the “raw” data, and how you can download your “raw” data file and run it through third-party tools such as Promethease (from SNPedia). Doing so, you would get additional interpretations of your data. “Are you isolating people with all the data?”. “You might have specific questions so I won’t limit your raw data”, Anne responded, but she also acknowledged that there can be too much data.

The conversation turned towards where to get help in understanding the test results. 23andMe has online material for its customers and they have also started to work with physicians to educate them more about genetics. Anne suggested that much of the help would be online, given that, in her words, “one to one counselling with the GP is changing”.

Anne Wojcicki and her team is in the UK for ‘The Personalised Medicine World Conference’ that is held at Oxford University Museum of Natural History from the April 15th to April 17th.

Biosensors in Everyday workshop January 15, 2015

Thursday January 15, 2015
10am to 4pm
INFOLAB C60B/C, Lancaster University
How can sociology and science and technology studies (STS) help us understand the use of biosensors to track everyday bodily experiences such as heart rate, ovulation, glucose levels and blood pressure? How have these devices become part of our everyday lives?
This interactive workshop will include talks from Professor Deborah Lupton (University of Canberra) and Dr. Karen Throsby (University of Leeds) and a chance to experiment hands on with biosensors and to explore their relevance to contemporary social thought.
Please bring a biosensor if you use one!
The workshop is free to attend but please register your interest by the 12th of January so we can ensure that there is lunch for everyone.
Register via the online store:   

What is about?

Monday evening (April 28th 2014), I attended a public meeting held at Lancaster Town Hall on government proposals to allow wider access to patients’ GP medical records – the scheme called “”.

The meeting was organized by Richard Tutton, Mairi Levitt, Garrath Williams and Maggie Mort from Lancaster University and sought to create space for public debate on an important issue that has not received much attention. Speakers were invited to give their take on and engage in discussions with the audience.

The speakers included:

  • Garrath Williams from the Department of Politics, Philosophy and Religion at Lancaster University
  • Colin Brown from Morecambe Bay NHS Trust, Chief Clinical Information Officer
  • Phil Booth from
  • Helen Speed, Information Systems Manager for the University Hospitals of Morecambe Bay NHS Foundation Trust
  • David Wrigley, NHS GP in Lancashire.

Briefly, is the NHS program that is meant to use patient data held at the GP practices for purposes beyond direct health care. It is part of the bigger re-organization within the NHS with the ‘Health and Social Care Act 2012’ that came into force in April 2013. Sharing of patient data from a GP practice to an information centre is not new, but what’s new with the program is the routine sharing of information from the patient’s medical record for “secondary use” that includes research, evaluation and planning of NHS services, but also allowing patient data to be sold to commercial/private companies. Read more on and Dr. Neil Bhatia’s website. See also Garrath Williams for an overview of the program.The roll out of the program has been extended until September 2014.

It was a lively meeting with good discussions that mostly centred on people’s concerns about the program. There were concerns about the opt-out model (you are automatically part of the program but if you want to opt out, you will need to fill out a form and hand over to your GP). But to opt out, you first of all need to know about the program, as Garrath pointed out.

You might have seen the leaflet that came through the door or you might have, like me, confused the leaflet with junk mail and never noticed the ‘pizza-take-away-like’ leaflet with information about the government’s suggestion for better care. Phil Booth believes there has been a lack of information about the program; not only have the general public been badly informed, but Phil said that he is also shocked by the lack of engagement with the GPs. Garrath made a similar point and calls for transparency and clear answers to the questions: What is for and who is it for?

During the meeting, there was also confusion about what kinds of data are actually being shared (what does it look like?) and the location of the data. Confusing seems to be the best way to describe the program at the moment.

Coming back to Garrath’s question of the purpose of Colin Brown and Helen Speed both spoke about the importance of having information at point of care to provide safe health care. It could potentially be life saving, Helen said. Yes. Having access to information at point of care is important, but wasn’t about “secondary use” beyond direct health care? So, if it is not for direct health care, then what?

Helen explained that the program is also about understanding what works best and what doesn’t work. She said that without getting and sharing information, we can’t compare across settings and NHS England needs that in order to deliver health care services that are safe and effective. Information is power for the good as well. It is not just scary, she said.

But what is the good? Better care, economic growth? NHS England writes on its website that “we think it would be wrong to exclude private companies simply on ideological grounds; instead the test should be how the company wants to use the data to improve NHS care” and it agrees with The Guardian’s Polly Toynbee who writes “it aids economic growth too, that’s to the good”. But many at the meeting had serious concerns about economic interests. Why is the government giving in to Big Business, a member of audience commented? Others also said that we need to prevent exploitative use of our medical data and “we don’t want an NHS business”.

What’s most at stake, if you ask Phil Booth, is the question of trust (or has it already been lost?). David was also very concerned about the program’s potential to dramatically change the GP and patient relationship and asked: Do you trust the government with your personal data? It is our most sensitive private information; our crown jewels, says Phil. We need to make sure the data is safe. And what about confidentiality? NHS England says the data will be pseudonymised, but with today’s technologies, nothing can escape the hands of those with the right skills and tools. It is in fact possible to identify the person based on the data because if its richness, Phil explained.

I will end by asking the same question David and others from the audience asked Monday evening: What’s the rush?