Data Breaches, Fertility Tracking, and the Importance of Privacy in the Digital Age

I was one of the millions of Americans affected by the 2014 Office of Personnel Management data breach. This morning, I was invited to participate in class action settlement against the federal entity. While all the effort and paperwork is not worth a few bucks to me, I figure this is as good a time as any to emphasize the importance of privacy and, namely, taking personal responsibility for safeguarding our personal data, especially in an technologically evolving world where the implications of shared data may be yet unknown.

Just look at the recent concern emerging around fertility tracking phone apps. Women across America a worried that the data captured by the application may provide insight into changes in their cycle, which may be imply pregnancy, abortion, or other private information. (Note: I’ve personally been use a free, open-source fertility tracking app called Periodical for about 7 years. It’s simple, but it’s 100% private.)

Identity theft following the OPM breach is the reason I became interested in privacy. I immediately froze my credit accounts upon notification so, thankfully, the would-be imposter was met with rejections when they tried to open new credit cards in my name. However, things could have gotten ugly. They still may.

Here’s the thing: If the federal government cannot be trusted to safeguard my personal data, who can? The hacker not only has my full name, social security number, and every address I’ve ever lived at, but 56 pages of private information, including my boyfriend’s social security number, the names and contact information of neighbors from every address I’ve had, and every detail about my life and history. The responsibility ultimately, for better or worse, falls onto our own shoulders.

Personally, I quit social media in 2014. I run Linux on my computer and phone, disable cookies, and use a VPN. I don’t have Siri, Alexa, Roomba, Ring, a smart TV, or other devices that could watch, listen, or map out my home. I’ve never had a show or music streaming service. Prior to the pandemic, I primarily used cash for purchases. And haven’t done DNA testing to investigate my ancestry. I sound like a crazy person, I’m sure.

It’s not because I suspect something nefarious is going, but instead because data is a gold mine and I want to maintain control over my most valuable resource. It may seem a bit extreme to some, my data secure and that give me a sense of security. No one owns my DNA, biometrics data, or data around my movement or behavioral patterns.

The problem is policies and regulations can’t keep up new technologies, and that gap could potentially be a dangerous place for consumers to be caught. In time, I trust that laws will be put into place to give consumers back control over their data. Your DNA will be yours, you’ll be able to opt-out of targeted advertising, and you won’t have some stranger showing up at your door asking you to verify the date of your last menstrual cycle.

In the meantime, I read the privacy polices to ensure I understand what I am agreeing to and the future implications based on how the language is structured. I would advise you do the same. (If there is any ambiguity, run.) If it feels overwhelming, look for a resource, such as tosdr.org, that will break down the key points for you.

You and I are responsible for safeguarding our own personal data. We can’t rely on the federal government or private corporations to have our best interests in mind. I don’t have anything to hide, and I’m sure you don’t either. And yet, we can’t know how the breadcrumbs of data we drop today could be used against or monetized without our consent in the future.

Privacy is a choice. It’s a power-play, an opportunity to exercise control over your data. It’s an empowering feeling and, at least for me, far more satisfying than the convenience of a TV that anticipates what show I want to watch next.

Where do you have privacy in your life today, and where do you feel your rights may be violated? As technology barrels into the future and AI enhances data analysis techniques, how might the data you’re sharing today (Spotify playlists, Netflix binging habits, email communications, DNA test, etc.) be taken together in support of someone’s bottom line? I don’t know the answer. All I know is, I don’t want my data sold, stolen, or hacked. Personally, I don’t want my data to be monetized without my consent, so I choose to limit sharing. If you so choose, you can do the same.

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