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In the wake of the Supreme Court decision to overturn Roe v. Wade, reproductive health data in medical records is vulnerable to legal requests in states that have criminalized abortion, or will soon. But there are even fewer protections in place for the digital footprints left outside the doctor’s office — and health tech companies are grappling with what to do about it.
“If I were in the reproductive health business, I would absolutely be rethinking my platform and how it worked,” said Lucia Savage, chief privacy and regulatory officer at Omada Health.
STAT reached out to two dozen companies that interact with user data about menstrual cycles, fertility, pregnancy, and abortion, asking about their current data practices and plans to adapt. The picture that emerged is one of companies scrambling to transform — building out legal teams, racing to design new privacy-protecting products, and aiming to communicate more clearly about how they handle data and provide care in the face of swirling distrust of digital health tools.
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Period-tracking apps have been the target of some of the loudest calls for privacy protections, and the most visible corporate response. At least two period-tracking apps are now developing anonymous versions: Natural Cycles, whose product is cleared by the Food and Drug Administration as a form of birth control, said it’s had calls to trade insights with Flo, which is also building an anonymous version of its app.
“We’re going to put our heads together just to double-check our anonymization practices,” said Natural Cycles CEO and co-founder Raoul Scherwitzl. “Competitors can be quite good at finding each others’ faults.” Another period-tracking app, Clue, was cleared by the FDA early last year for use as birth control, but has yet to release the product widely; Clue did not respond to questions about whether it had plans for an anonymized app, or whether it anticipated any changes to its birth control rollout, but put out a statement about its existing privacy practices with users.
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“Our business model is not based on profiting from our users’ personal data — we don’t sell them products based on what they track, we do not share any tracked data with ad networks, and we certainly do not sell our users’ data to any third parties,” the company said.
That stands in stark contrast to the majority of tracking apps for menstrual cycles, fertility, or pregnancy, which do make their money by displaying targeted ads at users and aggregating data to sell to third parties. That data sharing creates a web of potential viewers that can be difficult to untangle or for users to understand. For example, the privacy policy for BabyCenter, a pregnancy tracking app owned by the Everyday Health Group, states that it may disclose user data to legal and regulatory authorities, “any purchaser of our business,” and “any third party providers of advertising, plugins or content,” among others.
BabyCenter told STAT it is “evaluating our policies and practices for the purpose of honoring our mission: to help families through pregnancy, regardless of what shape pregnancy takes for them.” But it declined to offer more details on which policies are up for debate. Most other tracking apps contacted by STAT, including Flo, Glow, Kindara, Expectful, Sprout, The Bump, Hello Belly, and Stork, did not respond to questions.
For apps like Natural Cycles and Flo, the creation of an anonymous version is also a way to sidestep the complexity created by state-by-state abortion legislation. “The whole legal landscape is shifting” in ways that will be difficult for companies with limited resources to track and respond to individually, said Scherwitzl.
But companies that straddle the line between digital tool and health provider will have no choice but to dive headlong into the legal morass. Angeline Beltsos, a reproductive endocrinologist and clinical CEO of Kindbody, a virtual and in-person fertility clinic that operates nationwide, said the company has hired additional legal counsel to navigate the post-Roe environment, where many of the legal questions hinge on interpretations and local decisions on how aggressively to enforce abortion bans.
While Kindbody doesn’t provide abortion services, the Supreme Court decision spurred an increase of phone calls from patients in states with trigger laws banning abortions, Beltsos said. Even before the opinion was officially released, some patients requested that their embryos be moved to states with less restrictive laws and definitions of personhood, where they are freer to perform genetic testing or discard unhealthy or unused embryos.
“It is an unsettling time in regards to making sure you’re guiding people properly,” said Beltsos. She said the company is operating as usual so far, but will continue to follow developments closely with regard to the right to make decisions about the handling and testing of embryos.
Alife, a technology company using artificial intelligence to help providers improve patient outcomes and expand access to fertility care, has also been preparing itself for what it will do in the event that prosecutors come asking for personal health information. That could include encrypted information about embryos that have been created, used, or discarded. Those preparations mean studying the developing legal landscape, building contacts with legal experts, and “having enough capital in the coffers” to protect against anyone who might come seeking data, said CEO Paxton Maeder-York.
“It really comes down to one, being prepared to fight those legal proceedings with the dollars that we have, and then also understanding the local laws and jurisdictions within these states that we do operate,” he said.
Beltsos said Kindbody is also reviewing its policies related to the collection of data on its website, where it uses cookies to track browsing by patients. Such data, along with other consultations or referrals provided by Kindbody, could eventually become relevant to a prosecutor trying to enforce a state abortion ban. Beltsos said the company is taking steps to push back in the event that authorities seek access to details on the care of patients.
“In as much is allowed by law we would want to protect our patients’ privacy, their personal story — and that’s by oath,” she said.
As debate continues in internal meetings, though, not every company is ready to make their approach public. The majority of reproductive health tech companies contacted by STAT did not respond, or declined to answer questions about their plans.
Digital health company Ro — which acquired Modern Fertility and its ovulation, fertility, and prenatal care services last year — declined to answer questions about its response to the Dobbs decision. Fertility wearable maker Ava and virtual maternity care providers Oula and Wildflower did not respond to STAT’s requests.
What seems clear is that improved communication around data practices will be a critical point of distinction for users. Regardless of the level of the threat to user data — less health-specific sources of data, like search history, texts, and visits to websites with information about abortion, may be more likely to be used in a prosecution — companies will likely be forced to respond in a way that inspires trust. The Roe decision has already led to dramatic shifts in download patterns of period-tracking apps.
In the absence of data management improvements and accompanying transparency, new companies could find a market opening, said Savage — for example, digital tools that encrypt reproductive health data with a key that only the individual user has, so an organization can’t be the target of a subpoena. And existing companies could face a more challenging business landscape.
“For a company operating in that space it certainly also creates risk,” said Scherwitzl. “If you’re looking for investor money, investors don’t like risk,” which, in the long term, could result in less funding and fewer innovations in the already-underserved women’s health sector.
“It’s all connected,” said Scherwitzl. “Bottom line, it’s not good.”
Mario Aguilar and Mohana Ravindranath contributed reporting.
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