In your opinion, do companies collecting your data respect the notion of consent?

Or perhaps, like most of us, you’re getting a little jaded of being presented with options such as:

Let it also not go without mentioning, the number of times we, upon clicking to “personalize” privacy options (i.e., do damage limitation within what they allow), we see a text along the lines of:

“We at Company Inc. value your privacy. We and our 1,917 partners with whom we share your data—”

So, if that’s the baseline, what’s this about menopause apps now?

Periods may stop, but privacy violations sure don’t

While period/ovulation-tracking apps have come under much scrutiny lately for their privacy violations, menopause apps have received comparatively little regulatory (or research) attention.

So, researchers (Dr. Maryam Mehrnezhad et al.) conducted a modest yet significantly-sized survey (n=310) to examine privacy and safety issues in menopause-related digital technologies.

The problem is similar to that of the period/ovulation-tracking apps, in that most collect intimate health information—including emotional symptoms and sexual activity history—which could potentially be accessed or misused by employers, insurers, or scammers.

What Dr. Mehrnezhad and her team found is that many platforms lack adequate safeguards and are often rife with misinformation, to potentially add injury to insult (insofar as incorrect information can result in material harm).

This study was done in Europe, and many current apps fall well short of requirements under General Data Protection Regulation (GDPR) because their privacy policies are difficult to find or understand (see the sort of obfuscations we gave examples of up top), and a cynical person might even say that this is intentional when they’re making money from selling that data (let’s be clear, when they say “we and our 1,917 partners”, they mean “we and the 1,917 companies we sell your data to”).

So, how about in the US? Well, the US doesn’t have Federal equivalent, although some states have privacy laws of their own (with California’s being the strongest, albeit still not close to GDPR).

In short: if you have such an app, check your app’s privacy policy, but chances are very high your data is being sold to not just the highest bidder, but really, to every vaguely compelling bidder.

You can read the study itself, here: User Risk Perceptions and Privacy Attitudes towards Menopause Data Collection and Use

Writer’s anecdote: not a menopause-tracker exactly, but I used to use the Finch self-care app; it’s a cute interface with a virtual pet that basically does CBT and DBT, as well as being a journalling app. One of the things I liked about it was that all my data stays on my device, and even if I make a manual back-up of my data, I can back it up to a drive of my own, not theirs. However, last year they changed to prompt every day to upload my personal data to “the cloud” (pro tip: “the cloud” is just someone else’s computer; in this case, theirs) and, ironically for a self-care app, weren’t willing to take “no” for an answer. So, I deleted my data and deleted the app.

What can we do to get the same features without such privacy violations?

There are tiers of privacy available:

• Purpose-built apps: negligible privacy. You would get more privacy if you nailed your personal data to your front door, Martin Luther-style.
• Multipurpose apps: if you go for something like a general purpose journalling app, then there is slightly better privacy, just because when your data is sold or leaked, it’s not already formatted in an easy-to-analyse way. However, on the flipside, it’s not so easy to use for you, either.
• Offline computer/device: here we mean one that does not have access to the internet and will never have access to the internet at a future point. For example, you bought a tablet without mobile internet, and immediately disabled the WiFi, Bluetooth, etc.
• Pen and paper: near complete privacy, unless your home is searched (as happened to some American women in the wake of Roe vs. Wade being overturned).
• Between your ears: perfect privacy, with the caveat that you may not have perfect recall.

A good compromise is to do something like a monthly self-check of all the aspects of health you find important and can check yourself at home, for example:

Your Health Audit, From Head To Toe ← these are all excellent areas to pay close attention to

Take care!