The dark side of fertility apps - could your boss see your personal data?

Employers in the US are paying their staff to use fertility apps, and are thus able to access their data
Employers in the US are paying their staff to use fertility apps, and are thus able to access their data Credit: Caiaimage/Tom Merton 

The rise of women’s health apps means that if you’re currently pregnant, you can use your phone to track every detail. You can log your symptoms, mood, nutrition and sleep activity, as well as big milestones like the baby’s kicks. If you’re using Ovia, an app said to help 10 million women during pregnancies, you can even see the size of their hands and feet, and monitor whether your due date changes - all while being sent relevant medical advice.

But imagine how you’d feel if you weren’t the only one accessing this extremely personal information - but your employer was, too.

The Washington Post has found that some employers in the US are paying their staff to use fertility apps, and are thus able to access their data. Diana Diller, a 39-year-old employee for video games company Activision Blizzard, was given a dollar a day to use the app. But it meant that her bosses had access to data on how many workers using these apps had faced high-risk pregnancies or given birth prematurely, and how soon new mothers planned to return to work.

“Maybe I’m naive, but I thought of it as positive reinforcement: they’re trying to help me take care of myself,” Diller told the US paper.

She isn’t the only one to unknowingly find herself in this position. Though Ovia Health, the app developers, never sell women’s data to third parties, they do offer companies special packages, where the data of female employees using the app is aggregated in a ‘de-identified’ form to an internal employer website that can be accessed by human resources personnel.

The idea is, supposedly, to help firms plan ahead better and minimise health-care spending.

But there are now concerns that the data from these apps could be used to increase costs of health-care benefits. There are also legitimate fears around security, and the risk that individual women could be identified based on the information they have provided.

The news has quickly been labelled 'menstrual surveillance'  Credit: benis arapovic / Alamy Stock Photo 

In a statement, Ovia said they take “women’s health and data privacy very seriously” and “share de-identified, aggregate data with employers, in order to help women and families have healthier outcomes.” They stressed “an employer never sees individual, intimate details about any of their employee's lives” and said they follow "the same guidelines that medical professionals need to follow, and these guidelines protect and ensure the data we receive is treated securely.”

But the news has quickly been labelled ‘menstrual surveillance’, and is shining a light on the wider issues surrounding women’s health data.

Glow, which has several apps based around fertility, sexual activity and menstruation, is part of company HVF labs, which openly says it explores “data as a commodity.” The information that users provide ends up used by the company to improve its algorithms, so it can later be sold to potential advertisers, all as part of a money-making strategy - and data is not deleted, even after you stop using the services.

Clue, a hugely popular menstrual cycle app that I personally use, has made efforts to implement a positive data policy. But I was surprised to learn that data collected by the app is shared with a number of scientific research institutions like Stanford, Columbia and Oxford universities. Their motives are much more altruistic than other apps - the idea is to help promote advances in women’s health and science - but it is still an example of women's personal data being passed on to larger companies, often without their explicit knowledge.

Natasha Felizi and Joana Varon, part of tech activist group Coding Rights, have explored the privacy and data usages of menstrual-tracking apps, and called it “a new frontier of vaginal digitalisation.” The problem is that, even though users will typically consent to their data being used by companies in all these ways - be it to grant employer access or scientific research or for marketing - they may not be aware of what they’re signing up to in jargon-fuelled privacy policies.

Apps like Natural Cycles have enabled us to really get to know our bodies Credit: Nishat Ahmed /AP

The pair do have recommendations for women. They suggest that anyone concerned should change the privacy settings on their phone, try to pick apps that allow you to use them without specifically creating an account, and blocking access to specific data on apps where possible. For example, with Clue, users can choose to store their data only on their phone, rather than on the apps’ servers, meaning that it cannot be passed anywhere else.

But questions still remain as to whether these apps are doing more harm or good for women. Both Felizi and Varon view them as a sort of "unpaid labour", where women are unknowingly providing data for free to companies that can  go on to make millions from their information.

“If the apps are selling themselves as promoters of autonomy and women's self-awareness, users should ask themselves if the awareness they gain is truly freeing or if it is reinforcing stereotypes and prejudices in order to guarantee its scientific and economic viability,” they say.

For women like myself, health apps - from fertility awareness Natural Cycles to menstrual cycle apps and pregnancy trackers - have enabled us to really get to know our bodies. In a world where women’s pain is often ignored and dismissed, this has been a long-awaited move. It comes as companies are now becoming aware of the (financial) value in focusing on women’s health - the ‘femtech’ market is estimated to by worth $50 billion by 2025 - and so they are finally catering for women's needs.

But if the price of that means our data is being used by companies and insurers without our knowledge for their personal profit - and potentially to even change health benefits in a way that could be detrimental to women - then we need to start questioning just how much information we want to give them, and at what cost.