Is more information empowering? This is the question Professor Timothy Caulfield dives into in his column for NBC Think. He’s examines the booming popularity of tools like fitness trackers and genetic testing kits, and whether or not they are worth our investment. His advice? Don’t let the flashy marketing fool you.
Timothy is a Canada Research Chair in health law and policy, a professor in the Faculty of Law and the School of Public Health, and a research director of the Health Law Institute at the University of Alberta. He spends his time debunking myths and assumptions about innovation in the health and wellness sector — from research on stem cells to diets to alternative medicine — for the benefit of the public, even landing his own hit Netflix show A User’s Guide to Cheating Death.
Taking on direct-to-consumer, data-driven wellness products, Timothy shares what we’re really giving away when we mail in our DNA, and why more data does not necessarily mean a more healthy life.
“Empowering” is the message we hear from almost all the commercial entities that are promising to transform our lives through the provision of more information, including the direct-to-consumer (DTC) genetic testing industry and the companies pushing wearable activity monitors. Indeed, those Apple Watch and Fitbit ads, with their ocean-going triathletes and nocturnal urban street dancers, make it seem like monitoring your step count will transform a sedentary and pedestrian life into a 1980s music video.
But is more information — about your exercise, the quality of your sleep, or the nature of your genetic predispositions — going to make you healthier and happier?
Not necessarily. A lot of the new data suggests our technology isn’t transforming us into a generation of street-dancing, step-maximizing, sleep-mastering triathletes. No surprise. Behavior change is hard. And the quantification craze may also be making life a little less enjoyable. A series of studies published in 2016 found that measuring activities can make them feel more like work and, consequently, less fun. As a result, the push to quantify life, the study author concluded, has the potential to decrease the continued engagement in an activity and, worse, adversely impact our overall wellbeing.
Such studies fly in the face of the core promises of this more-data-is-always-good philosophy, which is that having access to this information, whether from a wearable activity monitor or a DTC testing company, will result in behavioral change. If these technologies are really going to make us healthier, they must do more than merely provide bits of information about our life, they must cause us to act on that information in a meaningful way.
Recently, 23andMe, probably the best-known of the genetic testing companies, published a report on the science behind their diabetes predisposition testing service. This new test uses a variety of genetic markers in order to offer a prediction (a prediction that not everyone agrees will always be accurate) on the chance of developing the disease. The 20-page analysis included a detailed description of the relevant genetic research and ended with just one sentence on how the actual health benefits would be achieved: “It is our hope that receiving personalized information about T2D [type 2 diabetes] predisposition and prevention can motivate and facilitate healthy choices.”
Specifically, 23andMe hopes — and to be crystal clear, the entire justification for the creation and provision of the data, beyond taking money from you, is tied to this hope — that people will receive this personalized data and be inspired to exercise more, eat healthier, stop smoking and drink less alcohol.
Alas, the available evidence tells us that this hope will probably not be realized. Study after study after study has found that providing genetic predisposition information to individuals — even when paired with professional counseling — does not produce meaningful or sustained behavior change. For example, a 2019 study of hundreds of individuals who received personalized genetic predisposition information found that while participants enjoyed the testing process few “reported making medical or lifestyle changes.” Some studies have found small and very specific behavioral benefits, but, as summarized in comprehensive review of the literature done by Cambridge University, in the aggregate, “expectations that communicating DNA based risk estimates changes behavior is not supported by existing evidence.”
The science regarding the health benefits of fitness trackers is also remarkably underwhelming. Some studies have found a short-term positive bump in exercise when people first start using activity trackers. Long term, however, the benefits often dissipate. But more concerning is the evidence that suggests that for some groups, using a fitness tracker might result in worse health outcomes.
For example, a relatively large and long-term clinical trial found that the research participants wearing fitness trackers lost significantly less weight than the research participants who weren’t. And the wearable wearers also weren’t any fitter. Another study found that for adolescents, fitness trackers were demoralizing, largely because the devices added a peer-pressure, competitive vibe to physical activity. As a result, for a large percentage of the teenage research participants, using an activity tracker left them feeling less motivated to exercise than before they had the gadget.
Our growing cultural obsession for more and more health data might also be robbing of us of a good sleep. Many people use devices, like the Fitbit and Apple Watch, to monitor their sleep. Once again, the idea is that this data will improve our slumber by providing useful feedback and nudging us to change our (bad) habits. But access to information about nighttime snoring, breathing and heartbeats seems to make some people more anxious and less able to sleep. It can even turn sleeping into a competitive sport. (Sleep harder, dammit!)
The idea that metricizing our life is a sensible and even responsible thing to do is increasingly framed as a wellness truism. Data is good. Data is good. Monitor, monitor, monitor!
As a result, the enormous gap between the alleged benefits and what the actual evidence tells us can feel jarring. But don’t let the flashy marketing or the intuitive appeal of the quantification trend fool you. More data is not always better and can, in fact, be harmful. It can also suck the joy out of your day. While there are some forms of data collection that are supported by science (regular self-weighing on an old school bathroom scale, if not done obsessively, may be a useful tool to help with weight maintenance), we can ignore most of the data-infused empowerment noise.
We don’t need personalized genetic information or an activity monitor to remind us of the benefits of exercise, eating real food and getting a good night’s sleep. And if you want to dance in the street, dance in the street. No wearable required.
My vote: less data, more living.
This article has been condensed from the original version published by NBC Think.
Interested in learning more about Timothy and what he can bring to your next event? Email us at [email protected].