Silicon Valley wants to get women pregnant.
From period apps that predict a woman’s most fertile days to startups that claim to fast-track in vitro fertilization (IVF), reproductive tech is booming, and investors are digging deeper into their coffers to make sure everyone who wants a biological child can have one.
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Somehow, women’s fertility apps have found a profitable niche in the predominantly-male tech scene, surging past all other mobile health apps in terms of funding revenue in 2014.
But while the tech industry has invested millions to ensure that future-mothers deliver happy and healthy babies, it also hopes they’ll deliver a lot of valuable private information.
As more women turn to data-driven fertility products, will they be forced to choose between taking control of their health and ceding control of how their personal information is used
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Quantified self apps are allowing women to learn more about their biology than ever before. Sexual health topics that are still sequestered to sex-ed class or a doctor’s office are becoming less stigmatized, thanks in part to new platforms that encourage women to converse and share information about their bodies.
But just like a visit to the doctor, that feedback doesn’t come for free. In exchange for the insights, users pay with personal data that could expose them to privacy risks they may have never considered.
Mobile health services have been storing and sharing your data with third parties for quite some time now, and often outside the bounds of strict regulatory guidelines that hospitals are compelled to follow. A 2013 study conducted for the Financial Times found that 20 of the most popular health apps shared data with approximately 70 analytics companies and advertisers who, in turn, used this information to target ads and build user profiles.
Unlike hospitals, which are rigorously governed by agencies and laws such as the Health Insurance Portability and Accountability Act (HIPAA), many digital health startups don’t have to comply with the data sharing guidelines that were put in place to protect patients from things like theft, fraud, and profiling.
According to a set of new documents released by the US Department of Health and Human Services in early 2016, any app that’s sponsored or paid for by a cover entity—a healthcare provider, health plan, or healthcare clearinghouse—must be HIPAA compliant. However, if an app isn’t built by a cover entity, its developers aren’t compelled to follow HIPAA’s mandates.
Of the most popular fertility and reproductive mobile health platforms—Glow, Ovuline, Celmatix, Kindara, Bellabeat, and Clue—only three of them, Ovuline, Celmatix, and Progyny were listed as HIPAA compliant, according to public information about the companies.
“In most cases, health apps are unregulated. There are currently no legal protections around the sale or disclosure of your data,” Maranda Cigna, director of global services at cybersecurity firm Rapid7, told me.
The swiftness with which mobile health is advancing has vastly outpaced the evolution of healthcare laws like HIPAA, which was enacted by US Congress in 1996 to protect the privacy of healthcare policy holders when personal records existed solely as paper files. Sometimes healthcare data laws apply to apps, and sometimes they don’t—even when they’re sharing the same information that’s regulated by HIPAA. And while the lack of parity between new technology and aging policies is the fault of no singular entity, it ultimately falls on the shoulders of mobile health companies to proactively ensure their products are built with users’ privacy interests in mind.
“A lot of app developers think they’re small enough to not get caught if they’re not HIPAA compliant,” Jason Wang, CEO of healthcare data security startup TrueVault, told me.
As of right now, there’s little regulatory guidance for apps that venture into healthcare territory, and the current definition of what constitutes “personal health information” is notoriously murky.
As a consumer, it’s not especially easy to make sense of an app’s privacy policy to find out what measures they are taking to protect your data. While most fertility apps do offer privacy policies, many of them are filled with legal jargon, and not all of them state that permission will be asked before data is shared with third parties.
“Users incorrectly believe that the information they put into apps is private, but that’s certainly not the case. That data is being pretty heavily shared,” said Cigna.
Women no longer live in an age where their financial data is their most valuable asset. Your personal health information, just like your social security number, is you. According to the Institute for Critical Infrastructure Technology, it’s 100 times more valuable than a person’s credit card number. Black market dealers can use a patient’s data to create fake IDs, file false claims, and collect their dependents’ personal information.
“There’s a market for health insurance fraud and abuse because the data associated with your health information can be used for things like creating fake IDs, or even filing made-up claims using a patient’s data and a fake provider number. Medical identity theft has become very valuable, and it’s not often identified by patients or providers, as is the case with financial fraud,” Cigna said.
A study published in The Journal of the American Medical Association this year investigated 211 diabetes mobile health apps and found those sharing data with third parties posed significant privacy risks because there are no federal legal protections in place to protect users, should their data become compromised.
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One of the most highly celebrated fertility apps among the tech community is Glow, which was launched in 2013 by PayPal co-founder Max Levchin. In 2014, Levchin claimed the period tracker had helped 25,000 women get pregnant (a number that raised some eyebrows in the medical field).
For women facing infertility, Glow offers a feature called Glow First that allows users to pay $50 per month into a shared pool of money that’s used to cover the financial burden women incur when fertility treatments prove unsuccessful.
In exchange for the insurance, the company announced that it would be offering up users’ health data to participating fertility clinics. Levchin referred to this as “crowdfunding babies.”
Glow, however, is one of those apps that straddles the regulatory dividing line. Despite the company’s claim that it’s “sitting on one of the largest datasets for women’s reproductive health ever assembled,” as of right now, Glow is neither HIPAA compliant nor under the oversight of the US Food and Drug Administration.
A spokesperson for the company assured the app neither sells data nor shares personally identifiable user information, but did not comment on Glow’s process of sharing the actual health data collected from its users.
There’s no denying that fertility apps are streamlining the regular things that many women already do to keep track of their reproductive health, even if they have no desire to get pregnant. Why would you track your period on a static calendar when you can log that same information into a dynamic system that’s not only more efficient, but also spits out personalized insights about your body?
Whatever privacy fears that data-sharing health apps may or may not instill, one thing that women certainly can fear is how much the current healthcare system disproportionately profits off of them. Clinics and insurance companies are raking in billions of dollars from women who struggle to conceive, and it’s possible that fertility apps can help users make informed decisions about whether or not a costly IVF procedure would be their best option.
The global market for in vitro fertilization (IVF), for example, is expected to hit $21.6 billion by 2020. Doctors working at the largest IVF clinics in the US reported performing 165,172 procedures in 2012 alone. But despite the astronomical market for IVF, the procedure’s success rates for women of all ages are still less than 50 percent.
“Treatments like IVF are mostly out of pocket, and most women don’t have great benefits. We’re paying up to $25,000 for every IVF round, and chances aren’t even 100 percent certain. You don’t pay for a baby, you pay for a treatment. Paying for volume versus outcome is backwards,” Halle Tecco, founder and managing director of digital health venture fund Rock Health, told me.
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Some fertility apps are taking the mobile health industry one step further and entering the realm of traditional insurance and healthcare coverage.
Startups including Glow and Progyny now offer fertility services and benefit options to companies with female employees seeking to conceive through IVF, which invites employers into women’s pregnancy-planning in ways they’ve never before been involved. For many women who can’t afford IVF, employer-funded fertility treatments may be their only option.
In 2014, Glow debuted Glow for Enterprise, which allows employers to contribute $50 per month toward participating employees’ fertility treatment funds, much like the way Glow First works. In exchange for opting in, employers enrolled in the program receive periodic reports of aggregated employee data.
Progyny offers an entire suite of fertility benefits to large, self-insured companies hoping to reduce risky maternity-related costs and “better manage the financial and emotional burden of infertility,” according to a statement.
But the ethical and privacy risks of employers having some stake in their employees’ pregnancies are more obvious than those associated with apps’ other data-sharing tendencies. More and more women in the US are choosing to put kids on hold because of workplace gender discrimination that prevents mothers from being hired for jobs for which they’re qualified, promoted by their managers, and paid as much as their male colleagues.
If a woman’s bosses are able to infer from a report delivered to them by a fertility app that she’s trying to get pregnant, what’s to stop them from finding a cause for firing her?
The collection of large amounts of employee health information is surprisingly legal, mostly because regulations like HIPAA have little jurisdiction outside of the actual health industry. Furthermore, startups like Glow and Progyny insist that only aggregated employee data will be seen by companies, which allows them to circumvent HIPAA’s ban on the sharing of confidential personal health information with employers.
Federal laws and the Pregnancy Discrimination Act are supposed to keep companies from discriminating against and terminating the employment of pregnant employees, but that hasn’t stopped policymakers from introducing legislation that would unravel women’s workplace protections, or managers from finding unrelated causes for which to fire them.
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Silicon Valley’s investment in fertility is a curious juxtaposition to the tech industry’s self-imposed barriers that keep working mothers down and out.
As a whole, the tech ecosystem has shown it still lacks initiative when it comes to prioritizing women and their health. Currently, approximately 96 percent of all health startup CEOs are men, according to Rock Health. And only a quarter of women’s health companies that received funding have women as CEOs.
But if more women were at the helms of mobile health companies, perhaps there would be greater potential for products like fertility apps to consider all of women’s needs—not just the ones that deliver data.
Ultimately, a woman’s choice regarding anything involving her body is hers alone. But just like deciding whether to pursue a career or start a family, women shouldn’t have to pick between the lesser of two evils when given the option to either protect their privacy or bet on new technology to succeed where traditional healthcare has failed them.
If the tech industry truly believed mothers were as valuable as their data, it’d already know that.
Silicon Divide is a series about gender inequality in tech and science. Follow along here.
Correction: An earlier version of this story listed Progyny as a company that was not HIPAA compliant. Progyny is HIPAA compliant and that story has been updated to reflect that.
