Data Brokers: How far has your data gone?
Oscar Casas | June 24, 2022
As individuals’ online data profiles falls into data brokers hands, just how far can one’s online presence go without their consent? Data brokers are companies that track and collect user data through different sources and then process it and license it to other organizations. The problem starts to stem when we delve into just how much data brokers can have over individuals and who they are allowed to sell to. This lack of transparency has left many individuals exposed to frauds, scams and situations that no one would have consented to had they known what was happening behind the scenes. Data brokers now more than ever are in a position where share price is directly perpendicular to ethical boundaries and concerns of its user base and this spiral although getting tacked with new regulation has a long way to go before users are safe to surf the web in peace.
In the dawn of potential Roe v. Wade overturn we should be especially aware of who owns the data about our reproductive health. Cycle and ovulation apps, like Flo, Spot, Cycles and others, have been gaining popularity on the market in recent years. Those range from simple menstrual cycle calendars to full-blown ML-empowered pregnancy “planners”. The ML-support usually comes with a premium subscription. The kinds of data they collect ranges from name, age, and email to body temperature, pregnancy history and even your partner’s contact info. Most health and body-related data is entered by a user manually or through a consented linkage to other apps and devices such as Apple HealthKit and Google Fit. Although there is not much research on the quality of their predictions, these apps seem to be helpful overall even if it is just to make people more aware of their ovulation cycles.
The common claim in these apps’ privacy policies is that the information you share with them will not be shared externally. This, however, comes with caveats as they do share the de-identified personal information with third parties and are also required to share it with the law authorities in case of receiving a legal order to do so. Some specifically state that they would only share your personal (i.e. name, age group, etc.) and not health information if they are required by law. However, take it with a grain of salt as one of the more popular period tracking companies, Flo, has been sharing their users’ health data for marketing purposes from 2016 to 2019 without putting their customers in the know. And that was just for marketing; it is unclear if they can refuse sharing a particular user’s health information such as period cycles, pregnancies, and general analytics under a court order.
This becomes an even bigger concern in the light of the current political situation in the U.S. I am, of course, talking about the potential Roe v. Wade overturn. You see, if we lose the federal protection of the abortion rights, every state will be able to impose their own rules concerning reproductive health. This implies that some states will most likely prohibit abortion from very early on in the pregnancy; where currently the government can fully prohibit it only in the last trimester. This can mean that people that live in the states where abortion rights are limited to none will be bounded by these three options: giving birth, performing an abortion secretly (i.e. illegally under their state’s law), or traveling to another state. There is a whole Pandora box of classicism, racism, and other issues concerning this narrow set of options that I won’t be able to discuss since this post has a word limit. I will only mention that this set becomes even more limited if you simply have fewer resources or are dealing with health concerns that will not permit you to act on one or more of these “opportunities”.
However, let’s circle back to that app you might be keeping as your period calendar or a pocket-size analyst of all things ovulation. We, as users, are in this zone of limbo where without sharing enough information, we can’t get good predictions; but with oversharing, we always are under the risk of entrusting our private information in the hands of the service that might not be as protective of it as they implied. Essentially, the ball is still in your court and you can always request for the removal of your data. But if you live in the region that sees an abortion as a crime; beware of who may have a little too much data about your reproductive health journey.
References
[1] cycles.app/privacy-policy
[2] flo.health/privacy-portal
[3] www.cedars-sinai.org/blog/fertility-and-ovulation-apps.html
[4] www.nytimes.com/2021/01/28/us/period-apps-health-technology-women-privacy.html
Images:
[1] www.apkmonk.com/app/com.glow.android/
[2] www.theverge.com/2021/1/13/22229303/flo-period-tracking-app-privacy-health-data-facebook-google