The overthrow of Roe and the deletion of period tracking apps will destroy women’s health research

Worrying about the government seizing data from a period-tracking app used to feel like tinfoil-wearing paranoia. in a postroe However, in the US, where abortion has been criminalized, concerns about health privacy are justified.

Numerous cycle-tracking apps that allow users to enter information about their periods have come under scrutiny — and their privacy and data-sharing policies haven’t allayed concerns. Just days ago, the Mozilla Foundation released a new report that identified privacy and security flaws in 18 reproductive wearables and period/pregnancy trackers.

“These apps — and almost every other app and gadget on the market — have data collection as the foundation of their business model,” wrote Ashley Boyd, Mozilla’s vice president of advocacy and engagement, in a blog post summarizing the company’s findings. “You can track our vital signs, where we’re going, when we’re going there, and who we are. This means our surveillance economy could now be used to track down, harass, arrest and even prosecute a person seeking an abortion.”

Unfortunately, the backlash may undermine some critical efforts that have been in the works for decades. Women have urged each other to take down tracking apps over fears their data could be used against them. But women’s health research, which has historically been overlooked and underfunded, relies critically on cycle-tracking data. Experts fear that a mass exodus of users of these apps could hamper scientists’ best efforts to recruit diverse populations and answer fundamental questions about reproductive health.

“A lot of what we understand about health is based on the male body,” said Amanda Shea, the chief science officer at Clue, a menstrual health company that makes a period tracking app. “I think there’s a risk that we’ll end up back where we were if we go down this path of people becoming afraid to talk to their friends and family about their reproductive health. to ask their healthcare providers questions; use digital tools to participate in research.”

There are several ways scientists use period tracking apps as part of their research. The data can show how different factors affect the length of a person’s menstrual cycle, their symptoms and their responses to different forms of birth control, Shea told The Daily Beast. Cycle tracking itself has also become an area of ​​research as research shows that women who track their periods learn more about their bodies and feel empowered when making medical decisions.

The number of participants recruited for rigorous clinical trials – the gold standard for research – can be limited by factors such as their cost and the effort and time commitment of researchers. Digital tools like cycle tracking apps can provide larger samples and a wealth of information otherwise inaccessible, such as: B. Data from people who do not live near major hospitals or cannot go to a clinic to participate in a study. Statistically rare outcomes like cancers or sexually transmitted infections can be difficult to study with on-site clinical trials, and when they are, Black people are often underrepresented. There is potential to represent a broader range of experience in app data and increase statistical power, helping researchers separate real signal from background noise in their tests.

Data from the Clue app will be used to look for patterns in menstrual cycle symptoms in people who develop breast cancer; changes in cycles due to COVID-19 vaccination; and the effects of air pollution on the menstrual cycle. Big data from digital health tools like Clue “represent a huge opportunity to advance research,” Shea said.

For example, Harvard scientists have been able to study post-vaccination cycle irregularities on a scale only possible through menstrual data from Apple’s Health app and Apple Watch. To go beyond anecdotes and measure the average duration and impact of these changes, the researchers analyzed data from over 125,000 people—far more than could be accurately and minutely recorded by any other means.

Ambreen Molitor, the national director of innovation for the Planned Parenthood Federation of America, told The Daily Beast that the organization relies heavily on partnerships with companies like Clue to conduct its menstrual health research (she also makes an app called Spot On, which covers both cycles permits and contraceptive tracking). Molitor said users are usually recruited for studies and experiments through in-app messages that allow them to opt-in to research.

It’s impossible to know how many potential users were convinced not to download a cycle tracking app roe Decision and Privacy Concerns. “There’s this missed opportunity” for these people and others who aren’t using apps to get vital information about their bodies, Molitor said.

Additionally, as women from certain regions or socio-economic backgrounds delete or stop downloading cycle tracking apps, gaps and bias in research data can be exacerbated. Ongoing studies that once could rely on having data representative of the greater United States could suddenly become shaky and be hampered by limitations.

Low-tech alternatives like tracking one’s cycle on a physical paper calendar can offer individuals some of the same benefits as app-based tracking, but this data isn’t shared with researchers as easily.

Still, it’s understandable why people would want to delete these apps en masse. Molitor stressed that some users might feel safe using apps that don’t require them to create an account and promise not to sell their data, but it can be difficult for consumers to tell safe from sketchy. In fact, Mozilla’s report ranked some of the top-selling tracking apps and wearables with a warning: “Privacy not included with this product.” The surest way to protect yourself is to rid your phone of these tools right away — even if they’re the Impaired ability of scientists to conduct some important studies on women’s health.

At the moment it is unclear what the solution might look like. Women across the country are scared — and rightly so. Scientists like Shea are aware of this fact, even as they strive to find workarounds that advance research.

“Women’s health research is still badly needed,” Shea said, adding that women deserve accurate information and health systems that meet their needs. “To achieve these things, we need research and we need to find the best ways for people to keep participating.”