Privacy is theft—sharing is caringBMJ 2014; 348 doi: https://doi.org/10.1136/bmj.g1320 (Published 05 February 2014) Cite this as: BMJ 2014;348:g1320
- Ray Moynihan, author, journalist, and senior research fellow, Bond University, Australia
“It’ll feel warm for a few days, then you and the bracelet will get used to each other,” says the glamorous Dr Villalobos as she attaches the electronic device to young Mae’s wrist, in order “to measure what we’d like to measure—which is everything.” The scene in the doctor’s surgery comes from Dave Eggers’s critically acclaimed new novel, The Circle, set inside a giant Google-like social media corporation.1
The book is an accessible, engaging, and at times hilarious masterpiece, set in a near future dystopia. It’s a timely attempt to understand how information technology is changing what it means to be human and why so many of us are embracing these strange changes. In The Circle, as in real life, we are willingly surrendering up the most intimate aspects of our individual and communal lives for corporate or political exploitation, including our personal health data. Recent revelations that England’s NHS may make patient data available to drug and insurance companies only serve to make The Circle’s insights even more prescient.2
The bracelet attached to the fictional Mae’s wrist is not dissimilar to the one recently attached to the wrist of Rupert Murdoch, which is said to measure how he eats, moves, and sleeps.3 In The Circle the high tech bracelet links with an internal electronic sensor, constantly measuring everything from blood pressure and cholesterol concentrations to stress levels, sleep patterns, and digestive efficiency. In addition, people in The Circle have routine check-ups every two weeks to screen for possible illness, including an exotic range of tests such as magnetic resonance imaging (MRI), part of a “wraparound wellness” service that emphasises prevention and personal responsibility. And in this bright new world all personal health data are available and accessible online. With a simple click the lovely Dr Villalobos was able to show the awe struck Mae a giant screen filled with her entire medical history, dating back before kindergarten. Part of the power of The Circle is the way its science fiction blends seamlessly with the facts of contemporary existence, where the present seemingly disappears into a perpetual future of ceaseless technological change.
Writing about the idea of the “quantified self”—people tracking everything from their sexual experience to the health of unborn babies—the Australian sociologist Deborah Lupton has emphasised its limitations as well as its possibilities.4 She describes how the “quantified self” can be understood within a neoliberal framework with an intensely narrow individualist focus, at the expense of a broader understanding of the social and environmental causes of health and disease. “When notions of health, wellbeing, and productivity are produced via data drawn from self-monitoring, the social determinants of these attributes are hidden.”5 In contrast, Lupton also highlights how some people in the “quantified self” movement have a strong interest in sharing their personal data. She described this activity as an example of “prosumption,” a new mix of “consumption and production that characterizes digital media interactions.”
Casting shadows over any debate about how to manage personal health data are concerns about commercial exploitation and government spying on ordinary citizens. In December it was reported that one of Australia’s surveillance agencies “offered to share information” about citizens with major intelligence partners, according to a secret 2008 document leaked by the whistleblower Edward Snowden.6 The document describes partners discussing whether to share “medical, legal or religious information.” And even the commercial promoters of greater use of personal health data acknowledge important side effects. In a report last year McKinsey and Company outlined a hypothetical scenario where MRI companies could use personal health data to aggressively market to people, so some “patients could end up pursuing and receiving unnecessary MRIs.” With candour, the authors conceded, “We see such risks as real and possibly unavoidable.”7
Leaving aside concern about government or corporate misuse of data, our obsession with quantification—unmodified by uncertainty and by clear awareness of limitations—carries its own tyranny. Our faith in medical numbers, sometimes little more than fabricated fictions arbitrarily interpreted, demands a reality check. Our distorting focus on surrogate measures at the expense of meaningful, real world outcomes is a grossly under-recognised problem in healthcare.8 A positive result from the prostate specific antigen test is a poor indicator of prostate cancer; bone mineral density accounts for only a small fraction of a person’s future risk of fracture; and the relation between cholesterol measures and heart disease is, at best, controversial. Knowing your numbers, and even sharing them, doesn’t make them less misleading.
The Circle has haunting references to Orwell’s 1984, similarly substituting simple slogans for complex reality: Secrets are Lies; Privacy is Theft; Sharing is Caring. The difference is that in 1984 a fear of physical torture keeps people in line. In The Circle a fear of virtual failure keeps folk online. And to be an online success in The Circle you have to be totally “transparent”: measuring and sharing everything, including personal health data. As the book moves to its conclusion one of the few voices of dissent laments that we are “creating a world of ever-present daylight” that, he says, “will burn us all alive.”
Without doubt, quality science in the public interest requires collection of some data. Distinguishing that science from crass market research and the corporate creation of need is one of the challenges ahead.
Cite this as: BMJ 2014;348:g1320
Competing interests: I have written many articles and books on the business of medicine. I am a senior research fellow at Bond University and a member of the scientific programme committee organising the Preventing Overdiagnosis conferences.
bmj.com Observations: Too much information? (BMJ 2014;348:g1319, doi:10.1136/bmj.g1319)
Provenance and peer review: Commissioned; not peer reviewed.