How to protect your data in a post-Roe world

Femtech World meets James Walker, CEO of Rightly, to understand what women can do to protect their health data after the Roe overturn.

In June 2022, the US Supreme Court overturned Roe v. Wade which previously gave women a federally guaranteed right to abortion across all US States.

Since then, experts have urged women to delete their period tracking apps fearing that the user’s data may become incriminating if seeking for an abortion.

Statistics from Rightly show a 4400 per cent increase in the number of requests for data deletion from women’s health apps such as Period Tracker, MyFlo and My Calendar, compared to the weeks prior to the Roe decision.

After the overturn there has been a “strong upsurge with women thinking about who’s got their data,” explains James Walker, CEO of Rightly. “There has been a sudden growth, both from the UK and from the US, after Roe v. Wade. 

“People have started to think ‘I don’t necessarily want all of my health data being held by a health app’ or ‘who could they share my data with?’.”

Is ‘anonymous’ really anonymous?

In response to these concerns, numerous women’s health apps have introduced an anonymous mode that “allows users to use the services without any personally identifiable information, such as name, email address, and technical identifier being associated with the account,” wrote period tracking app Flo. 

“The anonymous mode is the way to go,” says Walker. “But I think there is a step further, which is understanding how algorithms are used and how we are being marketed.

“I can have you as an anonymous user but I can still classify you and I can still work out how to market you. So, the anonymous mode is actually preventing your data being shared to a wider audience but it still doesn’t mean that you’re not being profiled or marketed by the app. 

“I would still be wary of how my data is being used even if in anonymous mode.”

‘The first thing to do is reading the terms and conditions’

Wariness about how ‘anonymous’ these apps really are, is backed by the fact that every activity carried out online leaves a digital trace that tech companies collect in form of data. These may have a functional purpose  – essential information needed to provide the services – or they may be sold for commercial reasons.

In response to the Dobbs decision, several femtech companies released statements assuring users that the data entered is ‘private and safe’. But, evidence gathered so far suggested the contrary.

For example, a study showed that nearly 90 per cent of the top 23 women’s health apps in the US share data with third parties, with only 50 per cent requesting users permission to do so.

“The first thing to do is reading the terms and conditions,” suggests Walker. “Most people don’t spend any time doing it.”

Walker explains that carefully reading the terms and conditions is the only precaution that can be taken as he explains that any other solution is only applied after the data breach has already happened.

‘Every data is health data’

Data protection in the EU is covered by the GDPR which stands for General Data Protection Regulation. This regulation went into effect in 2018 and it places limits on what organisations can do with users’ personal data.

“GDPR is pretty open on the way that your data can be used,” says Walker. “But the way your data is actually used is blurred with it. 

“The UK government is looking more and more into how firms can use anonymised health data to be able to build better algorithms and better services. They see the value in the commercial services that can be delivered from this.

“I think that leaving data privacy to governments will leave us in a situation where many people will be shocked and horrified in the future about how their data has been used and what’s been done with it.”

Walker suggests taking action, not only with women’s health apps, but with any online app as he explains that “every data is health data”.