Like the larger world of health-related apps, the field of women’s health apps and devices (sometimes called “femtech”) is growing rapidly, with hundreds of millions of users worldwide and investors dumping billions of dollars into the market. These apps cover everything from tracking menstruation to guiding users through conception, pregnancy and childbirth. Experts say the apps that deal specifically with pregnancy have real benefits for users, providing them with information that may not otherwise be readily accessible. Some apps even include message boards that allow users to share information or commiserate with others having similar experiences. They can also help correct users’ misconceptions about the often-difficult and confusing conception and pregnancy processes.
“Sometimes people think that they’re infertile or they’re challenged on the fertility front, and really it’s that our sexual education is really bad,” explained Professor Carmel Shachar, executive director of Harvard Law School’s Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics.
But these apps also pose many risks to users and may create serious liability issues for app companies, employers, health care providers and insurance companies that have access to the data collected.
Benefits For Users—And Employers
Users provide these apps with a wide array of extremely personal information related to their own health and activities, as well as that of their partners and their children, during pregnancy and afterwards. This includes period and ovulation schedules, mood, what medications they take, when they have sex, the color of their cervical fluid and details about their child’s birth like the date, hospital location and doctor’s name. All of this information can help apps provide personalized guidance and tips, such as when to try to conceive or when to seek medical attention.
In some cases, a portion of users’ data is also available in an anonymized form to their employers and insurance companies. Companies have been encouraging their employees to use health-tracking apps and devices like Fitbit to encourage physical fitness and activity, providing incentives like gift cards for participation. These initiatives also have other benefits for employers that collect employees’ health-related data, which can be used to negotiate better group health insurance rates and plan for possible health-related work interruptions.
Pregnancy apps are not as commonly used in employer health-tracking reward programs, but this is changing. The information that the apps collect has obvious utility for employers, who can use it to better balance upcoming health care costs, encourage better health practices (in turn reducing such health care costs) and more effectively plan around employees’ pregnancies (such as scheduling temporary replacement workers). One of the most popular apps, Ovia, has released a version that allows employers to pay a fee to receive anonymized data about their workers’ sexual health and pregnancies, and reportedly includes over 10 million employees at participating companies. Some businesses have chosen to provide their employees an incentive to opt-in—$1 a day in gift cards, in one case profiled by the Washington Post— but experts note that employee permission is not actually required for their employers to receive information based on their data.
Employers reportedly cannot see all of the information workers enter into the app, but according to Dr. Sarah Fox, a researcher who studies health technology, this access gives employers “a picture of how many people were seeking to conceive, how many people might be pregnant, how many high-risk pregnancies might be in the pool of their employees, or when people were thinking of heading back to work.” It also shows employers which articles in Ovia’s library their employees read most. These articles delve into subjects like filing for disability, as well as intimate health advice like the best sex positions during pregnancy.
The Myth Of Anonymity
Despite the promise that this data is anonymized to protect users’ identities, there is significant evidence that this is likely not as foolproof as intended. In 2018, a group of MIT researchers showed that they could successfully identify an individual from supposedly anonymized data, especially when they had access to additional information about that individual’s actions via their mobile devices, such as phone calls and location data. In the 2017 report The Pregnancy Panopticon, online privacy and free speech nonprofit the Electronic Frontier Foundation (EFF) reported that nearly all of the pregnancy-tracking apps they examined sent identifying information to third parties. This meant these parties could “uniquely identify your phone and track which applications you are using on it (and sometimes more detailed information as well).” The EFF added, “When found in conjunction with applications that record intimate details about our health and sex life, this can be especially troubling.”
The privacy of medical data in pregnancy apps is not protected by the Health Insurance Portability and Accountability Act (HIPAA), which applies only to entities like health care providers and health plans. Many of the apps also have labyrinthine terms and conditions and privacy policies that grant them permission to share users’ data with any number of third parties. Earlier this year, the Wall Street Journal reported that multiple popular apps were sending information about users—often personal and health-related—to third-party platforms including Facebook. For example, contrary to the privacy policy of the Flo Period & Ovulation Tracker, which reportedly boasts 25 million active users, the app alerted Facebook when its users were having their period and when they indicated in the app that they were interested in becoming pregnant. While Flo claimed that users’ data would be “depersonalized” to prevent identification, reporters found that the information the app sent to Facebook could be matched to users’ individual devices.
This means that anyone with access to the information users provide pregnancy apps—including employers and insurers as well as the third-party advertisers to which apps sell data—may be able to identify individual users from the supposedly anonymous data they provide. This introduces a host of potential workplace problems like pregnancy discrimination and could allow insurance companies to use personal information to make decisions about individuals’ coverage or rates without their knowledge. The Washington Post reported in April that, in an effort to protect their privacy, many women avoid giving their personal data to pregnancy apps, often providing fake information so they can still use helpful functions.
Understanding The Liabilities
While the U.S. Pregnancy Discrimination Act forbids employment discrimination based on pregnancy, workplace pregnancy discrimination and harassment is a rampant problem. Some employers routinely factor pregnancy into hiring and promotion decisions. Others often fail to provide pregnant employees the necessary accommodations such as allowing more bathroom breaks or not requiring pregnant women to lift as much weight, sometimes as a way to force them out of their jobs without having to fire them directly. In some cases, when workers push for what they need to remain healthy and do their work while pregnant, they are fired or face other recriminations. According to the U.S. Equal Employment Opportunity Commission, charges against employers for workplace pregnancy discrimination since 2010 have ranged between 2,790 and 4,029 per year, roughly comparable to the number of workers’ religious discrimination charges over the same years.
As with any apps, pregnancy apps are often susceptible to security vulnerabilities, exposing users to possible data theft. Of the 20 pregnancy apps they examined, the EFF found many had insufficient security protections, leaving users exposed to basic cyberattacks and account hijacking. In one case, anyone could access a user’s account with just their email address. According to Fox, some of the bigger apps have attempted to address these issues (with only partial success), but many of the smaller apps have not. “It’s not something that’s surfaced to the level that users understand when they download the app with the expectation that their information is secure,” she said.
Third parties that store health information are frequently targeted in data breaches, resulting in users’ personal information being exposed and opening companies to potential legal liability. Following a data breach that exposed millions of medical diagnostic patients’ personal information, Retrieval-Masters Creditors Bureau Inc. recently filed for Chapter 11. The company reportedly spent $3.8 million to mail more than 7 million notices to individual patients and incurred additional costs to hire more information security staff. Quest Diagnostics, one of the companies whose patients’ information the breach exposed, now faces a class action lawsuit. After its own data breach that lasted almost a year before it was discovered, Premera Blue Cross reached a $74 million settlement in June with 11 million patients whose data was exposed.
Potential personal information exposure can have other consequences for users, even impacting their physical safety. As Fox noted, exposure of this information could increase the likelihood of intimate partner violence if an abusive partner or ex-turned-stalker obtained a user’s data and could see data like location or sexual history. “If you were stalking someone, you might want to know things about their sexual activity, like if they moved on to a new partner,” Fox said. The volume of data the apps contain is “a goldmine for a stalker,” she added.
With the recent passage of multiple new state-level anti-abortion laws in the United States, users may also find themselves in serious legal trouble. Pregnancy apps contain information that might help prosecute women who choose to have abortions or have miscarriages, which legal experts have pointed out could lead to criminal investigations under some of the new laws as currently written. According to technology privacy researcher Richmond Wong, many apps’ privacy policies contain exceptions allowing law enforcement and other governmental agencies to access users’ accounts via their employer, insurers, health care providers or the apps themselves. “Maybe the employer or health care company would fight it, maybe not,” Wong said. “The app companies might fight it too, but at least in the policies they set out, they don’t have to.”
The political and ideological beliefs of the people behind the apps can also impact unsuspecting users. In May, The Guardian revealed that popular pregnancy app Femm—which has hundreds of thousands of users in the United States, the European Union, Latin America and Africa—has close ties with Catholic organizations and donors who oppose the use of birth control. Indeed, the app discourages users from using hormonal birth control methods, claiming that “they are causing illness and degrading health.” The app instead encourages women to learn their cycles to prevent pregnancy, which is far less effective. The company behind the app does not disclose its ideological background, identify sources of funding or verify the qualifications of its medical advisors.
Companies may also face shifting regulatory environments as more data protection legislation is passed. According to Wong, the current model for companies in the United States is, “As long as we tell you what we’re doing in the privacy policy, no matter how bad it might be, it’s okay because we’ve told you about it.” But that may change, especially as regulations designed to give users more control over and access to their data go into effect, such as the European Union’s General Data Protection Regulation (GDPR) and California’s Consumer Privacy Act. Given the possible harsh consequences for violations—including fines, reputational damage and legal liability resulting from a breach or other security incident—any companies that come into contact with users’ data should ensure compliance with data security best practices to prevent potential damage to users and themselves.
Smarter Data Protection
Given the many dangers, employers, insurance companies and health care providers may want to tread carefully when advocating the use of pregnancy apps, officially endorsing specific apps for their employees, enrollees or patients, and deciding how they use the information they can access. “If employers are going to use aggregated data to better judge their health care spending, I think they need to train the people who have access to that data in employment discrimination to make sure that they’re using the information appropriately and responsibly,” Shachar said. Given the security concerns, she added, “Taking the time to really understand what products are being offered—not just taking the first app that comes through the door—would really benefit those insurers and employers.”
App companies should address potential user privacy concerns by engineering their products to be more secure by design, re-examining what data they provide to whom, and by making their privacy and data-sharing policies clear and easy for the average user to understand.
As Shachar noted, “It can be a really exciting tool, but I think like most health apps, consumers, employers, insurers haven’t fully thought out the ramifications of it. And the stakes are really high when it’s something as personal as pregnancy and childbirth.”