Australian research sounds the alarm on fertility apps sharing intimate data

The study reviewed apps including Baby Center, Glow Fertility and Ovia Fertility for how they managed sensitive data to create a profile of a user's fertility.

It found concerning practices on the apps including confusing privacy messages, a lack of choice in how data is shared and used and inadequate de-identification measures when data is shared with other organisations.

Many of these apps are intended for use by children as young as 13.

University of NSW law researcher and lead author on the study Dr Katharine Kemp said the findings raised ethical concerns around the way this sensitive health data was being used.

"The most concerning thing is that the apps are looking for ways to repurpose your data for profit.

"So that can be through "research", partnerships, or using it for their targeted advertising, or sometimes selling it as a de-identified data set," she said.

"Those extra uses of the data can lead to people being exploited or disadvantaged or possibly humiliated in future."

Intimate data is collected from users to create a profile of their fertility and health. This includes pregnancy test results, when they have sex and whether they have an orgasm, mood changes, and health conditions like endometriosis.

TASIVF medical director and fertility specialist Dr Manuela Toledo said that while she did not recommend fertility apps for her patients, many are already using them.

"We find especially with our IVF patients, they're already doing a lot of treatment and they're getting a lot of information.

"And we find that if we start advising them to do additional things as well, it really becomes information overload," she said.

"But a lot of patients who come to us are already using fertility apps. So they'll come and say, hey, my fertility app told me I was ovulating. But then I didn't actually ovulate because I did an ovulation kit, and it didn't show up."

These apps make up a major section of the "FemTech" market which is projected to be worth over US$50 billion by 2025.

Dr Kemp said that recent data breaches in Australia impacting Optus, Latitude Financial and Medibank showed the vulnerability of personal data stored by third parties and highlights the urgent need for reform of the Privacy Act.

"I think what the recent major data breaches mean for us here is that a lot of Australians have that personal experience of what can go wrong if their data is kept for much longer than it needs to be kept," she said.

"You have companies that are holding on to this health data for three years, even seven years after people have stopped using the app. So every day that goes by, you are increasing the risk of all of that data being exposed in a breach, and there should be much tighter restrictions on how long that information is being kept."

Dr Kemp's review of the apps in conjunction with Choice consumer advocates found that while not perfect, the fertility app Natural Cycles was the best choice for clear information and choices about your data on the app.

They advised steering clear of BabyCenter, Glow Fertility, Eve by Glow, Ovia Fertility and What to Expect due to concerns these apps are sharing user data and seeking sensitive data not necessary for the app's function.

ACM contacted Glow Fertility who said they did not share personal data with anyone and will never sell user's data.

"We have an extensive set of internal protocols that protect user data," the spokesperson said.

"Every single employee at Glow is required to go through privacy and security-related training. To further protect user data, we created a new feature in 2022 called 'offline data protection' which enables our users to permanently delete their key health data from our servers (and only store them locally on their device). We believe it's truly 'your data, your choice'."

ACM also contact Ovia Fertility and BabyCenter for comment.

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Research conducted by Eve Health Fertility in 2019 looked at over 400 fertility apps and found that only 42 per cent were correct in what they were promoted to do for women.

Dr Toledo confirmed that primary health care providers should be the first point of call for fertility issues.

"One of the reasons we don't recommend the apps is that they're not always accurate. Sometimes couples will rely on the app or the ovulation kits so much that they save themselves for when the app is telling them it's okay to try for a baby.

"And we find that the pregnancy rates are better if couples start trying before they reach their peak fertility, rather than waiting for the app to tell them what day is the best," she said.

"For anyone using a fertility app, it would be worth checking with your fertility specialist or your GP and confirming that the app is actually working for you."

Infertility affects one in six Australian couples of reproductive age.