How do you protect your personal health information from hackers, data miners, and now, possibly, the state? Start by deleting your health tracking apps.
On June 2, Erin Matson, women’s health activist, co-head of Reproaction, and a former chapter president of the National Organization for Women (NOW), tweeted this:
Matson elaborates further to Parentology.
“I deleted the app I’d been using to track my period because we’re in the middle of a frightening political moment where men who want to control women are pushing through anti-abortion laws,” she says. “Through my work leading Reproaction, which runs a Stop Prosecuting Abortion campaign, I’m well aware women are already being prosecuted for abortion and pregnancy outcomes; this will only increase with the radical abortion bans currently sweeping through the states.”
Making a move to paper tracking of her menstrual cycle was one of Matson’s first actions. “I’ve been reading a number of stories about how a range of apps are sharing our data,” she says. “Finally, the anti-abortion movement frequently positions itself as a neutral actor online in order to get access to women and people who can become pregnant.”
This isn’t alarmist; it’s reality. The seemingly innocent documentation of your cycles or pregnancy can be easily accessed and used against you.
How Private is Your Health Data?
It’s not as private as you think.
Karen Levy, an assistant professor of information science at Cornell, coined the term “intimate surveillance” in her 2016 Idaho Law Review paper. She hinted at trouble to come, although the possibility of criminalization of abortion wasn’t on her radar.
“Surveillance poses new challenges in intimate relational contexts,” Levy writes. “It encourages an ‘algorithmic subjectivity’ about sexual behavior, normalizes monitoring practices and data-driven approaches to intimate relations, and brings to the fore complex and thorny issues around privacy, consumer expectations, and the integrity of information flows.”
Most health information, like that on your official health records, is protected by something called the Health Insurance Portability and Accountability Act (HIPAA). HIPAA is supposed to protect your information, regulating the use and disclosure of protected health information (PHI) held by “covered entities” like health insurers, health plans, and medical service providers. Mostly, this means that your info through your insurer is safe from being sold for marketing purposes, and that your employer can’t access your records.
What HIPAA doesn’t protect you from is the state accessing your data in the case of a criminal investigation. With a court order or subpoena, the state or government can see your personal data, and use it against you.
Given the recent developments in some states of anti-abortion legislation that aims to punish women, this means that, if those laws went into effect, the state could access your records, find out you were pregnant, and then prosecute you if you terminated that pregnancy or even had a “suspicious” miscarriage.
How Private is Your Tracking Data?
While your official health information in your official health records held in a covered entity is HIPAA protected, most of your self reported health tracking data, like your monthly cycles entered into your favorite period tracker app, is not.
That makes it very easy for your info to be used for data mining, or simply to be used against you as evidence by the state. Personal health record apps and programs are not secure, are not bound by HIPAA, and should not be used to store any potentially incriminating or sensitive information. Be very careful about what you list on these. This includes apps like Flo, Eve, Glow, Natural Cycles, and the new Apple app called Cycle Tracking.
Only the period tracker Clue is covered by HIPAA, plus the information is not stored by the app or on the cloud, but locally in your personal device (you don’t need to create an account). While HIPAA, as stated above, won’t protect access in the case of a criminal investigation, having your data on your device might. It’s easier to delete it, and you can lock your phone (Apple in particular hasn’t been very cooperative with government when it comes to unlocking its phones).
How Widespread is This Anti Abortion Legislation?
According to reproductive health and rights organization The Guttmacher Institute, forms of legislation that could potentially criminalize abortion are on the rise. It notes:
- 19 states have laws that could be used to restrict the legal status of abortion.
- 9 states retain their unenforced, pre-Roe abortion bans.
- 7 states have post-Roe laws to ban all or nearly all abortions that would be triggered if Roe were overturned.
- 5 states have unconstitutional post-Roe restrictions that are currently blocked by courts but could be brought back into effect with a court order in Roe’s absence.
- 7 states have laws that express the intent to restrict the right to legal abortion to the maximum extent permitted by the U.S. Supreme Court in the absence of Roe.
None of this bodes well for health information and privacy. Much of it depends upon Roe v. Wade being overturned, which obviously hasn’t happened. However, there are some current laws that criminalize certain types of abortions, such as ones in the last trimester. More than a third of states have “20 week abortion bans,” and some have not yet been challenged in court. Track your cycles, document your pregnancy, and then have to have a late abortion, and that data could potentially be used against you later.
Use a Paper Calendar, Maybe
Perhaps in the case of period tracking, technology is overrated. Women used paper calendars to record this information for decades before computers and smartphones. Paper is efficient, it works, and it can easily be disposed of if privacy becomes a concern. And while young women think of the convenience of tech as a given, they need to be educated about online privacy concerns. Because when it comes to the state, there isn’t much privacy to be had.
Matson reflects on the grim potential for the policing of women’s bodies, and the unfortunate choices women face in order to protect themselves.
“While I wish we didn’t need to worry about these things in 2019, more than ever, we do.”