US Dexcom users with type 1 diabetes were furious with the company last week after being confronted with new app Ts & Cs demanding agreement before allowing them to access their glucose readings. The terms involved the company's use of AI, use of personal data, and signing away legal rights. And this applied accross the board including the collection of data from children using their devices.
The updated Ts & Cs appeared following an app update in October and before being able to access glucose readings, users encountered a message requiring them to press "CONTINUE" or uninstall the app if they did not agree. There was no clear opt-out.
The backlash has spread across social media, raising uncomfortable questions about how much control medical technology companies should have over those who depend on their products to make decisions about insulin, food and their immediate safety.
Agree to the terms or lose access to glucose readings
The anger is understandable with social media comments being liked by thousands within the diabetes community. Nobody with T1D should be confronted with a lengthy legal agreement when they simply want to check their glucose level, especially if dealing with a hypo or medical situation which can affect concentration, judgement and the ability to understand information.
Yet Dexcom was asking users to agree to contractual conditions at a time when some might be struggling to think clearly.
One Instagram commenter summed up the frustration in a comment attracting 2,650 likes:
Another questioned whether someone experiencing a hypo could meaningfully agree to contractual changes while their judgement was impaired.
This wasn't simply another annoying smartphone update. It involved access to medical information PWD rely on throughout the day and night, sometimes to prevent a medical emergency.
What were Dexcom users being asked to agree to?
The controversy centres on three issues: artificial intelligence, control over personal data and restrictions on legal rights. All are particularly concerning when agreement is being demanded as a condition of accessing glucose readings.
AI is not what users are asking for
Dexcom's app terms include provisions relating to AI-powered features and restrictions on third-party use of its technology and data for AI applications. But the response from users suggests that developing more AI features is hardly their priority.
Others questioned why the company was concentrating on new technology while existing sensors continued to suffer from reported accuracy problems, premature failures and unreliable alarms.
There is also a difference between using AI to improve medical technology and allowing personal health information to be used for other purposes. PWD should know what information is being used, by whom and for what purpose, rather than being expected to accept broad contractual wording just to continue monitoring glucose.
Personal data — whose glucose readings are they anyway?
Dexcom's terms have raised questions about ownership and control of sensor-generated glucose data, alongside provisions concerning mobile-device information, location permissions and browsing activity.
Our CGM data can reveal a considerable amount about our everyday lives, including patterns around meals, sleep, physical activity and episodes of hypoglycaemia. Combined with other information, it can provide an increasingly detailed picture of our behaviour and health.
Dexcom maintains that its privacy policy hasn't changed and that it doesn't sell private data to third parties without consent. This doesn't resolve questions about the breadth of its contractual provisions, including wording claiming ownership of sensor-generated data and restricting certain research and independent assessments.
The glucose readings are generated by sensors attached to our bodies. Why should a manufacturer be claiming ownership or restricting what we can do with that information?
Legal rights — agree now, object afterwards
Among the most controversial provisions were restrictions on taking legal action against Dexcom. The US agreement includes mandatory arbitration for certain disputes and a class-action waiver, limiting users' ability to bring covered claims through the courts or collectively with other customers.
If a sensor provides inaccurate readings, fails repeatedly or contributes to an incident involving insulin treatment, the ability to hold its manufacturer accountable matters.
But Dexcom users were presented with just two options: accept the Ts & Cs or uninstall the app. For someone with T1D needing glucose readings to make immediate treatment decisions, there was no meaningful choice.
Someone experiencing a hypo may already have impaired concentration and judgement. Pressing "CONTINUE" to regain access to their readings is hardly the same as freely agreeing to restrictions on their legal rights. Could users effectively have been accepting these terms under duress?
Dexcom's US agreement allows a 30-day period to opt out of arbitration, but users must first accept the terms, then separately email the company's legal department to object.
As one Instagram commenter complained:
An opt-out afterwards doesn't change the circumstances in which agreement was demanded. PWD should never have to surrender legal rights simply to check their blood sugar.
Dexcom apologises — but what users really want is accuracy and reliability
Following the backlash, Dexcom apologised for the confusion and stress caused by the updated terms, explaining that the changes were intended to support innovation and future features.
But many users were far more concerned about the performance of the CGMs they already rely on. One Instagram comment attracted 6,420 likes:
Another user complained of more than 16 G7 failures since June, while others described inaccurate readings, alarms and sensors failing before the end of their advertised lifespan.
And these complaints aren't without context. Published clinical trials and independent research reveal just how many Dexcom G7 sensors fail to reach their full advertised wear time.
When a CGM fails, we're left dealing with interrupted glucose monitoring, additional finger-prick checks, replacement requests and potentially hours without the information we've come to depend upon. Inaccurate readings and false alarms can be equally frustrating, particularly overnight or when making insulin decisions.
What users are asking for isn't complicated: glucose readings they can trust, dependable alarms and sensors that last their advertised lifespan. Before introducing more AI-powered features, perhaps manufacturers should concentrate on delivering those basics consistently.
Why should UK T1Ds be concerned?
Although the backlash started in the US, UK Dexcom users have also reported encountering similar app notifications, including within the UK diabetes online community. The precise contractual terms presented to British users, however, still need clarification.
Here, CGM systems are commonly supplied through the NHS. Our choice of manufacturer is often influenced by local prescribing arrangements, clinical recommendations and compatibility with insulin pumps. Switching systems isn't necessarily straightforward, even when we're unhappy with a manufacturer.
The NHS pays for the equipment, clinicians prescribe it, but it's PWD who wear the sensors, generate the glucose data and deal with the consequences when something goes wrong.
UK data protection law offers safeguards concerning personal information, and US arbitration provisions can't simply be assumed to override UK legal rights. But whether particular terms are legally enforceable is only part of the problem.
Should NHS patients have to accept additional commercial conditions imposed by manufacturers to continue accessing their glucose readings?
And when NHS organisations agree to purchase these products, do they examine the contractual powers manufacturers retain over users and their medical information?
The NHS pays, but who protects patients?
CGM has made an enormous difference to managing T1D, providing glucose information and alarms that many of us now depend upon every day.
Yet the more dependent we become on these systems, the more control manufacturers acquire through their apps, user accounts and software updates.
What happens when a manufacturer changes its Ts & Cs and users disagree? Can they continue accessing their readings? Are patients consulted about the changes? And what protections does the NHS insist upon when purchasing equipment that may be essential to treatment decisions?
These questions aren't confined to Dexcom. Abbott, whose FreeStyle Libre systems are widely used across the UK, also requires users to accept app terms and conditions.
CGM manufacturers are entitled to develop their products and introduce new technology, but PWD aren't simply ordinary customers using another smartphone app. We're managing lifelong conditions with equipment that we have very limited practical choice over.
Dexcom's backlash should serve as a warning to every CGM manufacturer. We shouldn't have to choose between protecting our rights and checking our blood sugar.
Our glucose readings should never become bargaining chips in a corporate contract.
