IFollowing the Supreme Court’s decision to overturn Roe v. Wade said reproductive health data in medical records is vulnerable to legal demands in states that have criminalized abortion, or will soon do so. But there are even fewer protections in place for digital footprints left outside the doctor’s office — and health tech companies are wondering what to do about it.
“If I was in reproductive health, I would absolutely rethink my platform and how it works,” said Lucia Savage, privacy and regulatory manager at Omada Health.
STAT contacted two dozen companies that interact with users’ data on menstrual cycles, fertility, pregnancy and abortion, asking them about their current data practices and plans to adapt. The picture that has emerged is of companies scrambling to transform – building legal teams, rushing to design new privacy-protecting products and aiming to communicate more clearly about how they process data and provide care in the face of swirling distrust of digital health tools.
Rule-tracking apps have been the target of some of the loudest calls for privacy and the most visible corporate response. At least two period-tracking apps are currently developing anonymous versions: Natural Cycles, whose product is licensed by the Food and Drug Administration as a form of birth control, said it has received calls to exchange information with Flo, who also builds an anonymous version. of its application.
“We’ll brainstorm together just to recheck our anonymization practices,” said Raoul Scherwitzl, CEO and co-founder of Natural Cycles. “Competitors can be pretty good at finding each other’s 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 was considering an anonymized app or planning any changes to its birth control rollout, but released a statement about its existing privacy practices with users.
“Our business model isn’t based on profiting from our users’ personal data – we don’t sell them products based on what they track, we don’t share any tracked data with advertising networks, and we don’t sell certainly not our users’ data to third parties,” the company said.
BabyCenter told STAT that it “evaluates our policies and practices with the goal of honoring our mission: to help families during pregnancy, no matter what form pregnancy takes for them.” But he declined to offer more details on the policies to be debated. Most of the 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, creating an anonymous version is also a way to circumvent the complexity created by state abortion laws. “The whole legal landscape is changing” in ways that will be difficult for businesses with limited resources to individually track and respond to, Scherwitzl said.
But companies that straddle digital tool and healthcare provider will have no choice but to plunge headlong into the legal quagmire. Angeline Beltsos, reproductive endocrinologist and clinical CEO of Kindbody, a virtual and in-person fertility clinic that operates across the country, said the company has hired additional legal counsel to navigate the post-Roe environment, where many legal issues depend on local interpretations and decisions about how aggressively to enforce abortion bans.
Although Kindbody does not provide abortion services, the Supreme Court’s decision spurred an increase in phone calls from patients in states with laws banning abortion, Beltsos said. Even before the official release of the advisory, some patients have requested that their embryos be transferred to states with less restrictive laws and definitions of person, where they are freer to undergo genetic testing or dispose of unhealthy or unused embryos.
“It’s a troubling time to make sure you’re guiding people correctly,” Beltsos said. She said the company was operating as usual so far, but would continue to closely monitor developments regarding the right to make decisions about the handling and testing of embryos.
Alife, a tech company using artificial intelligence to help providers improve patient outcomes and expand access to fertility care, has also prepared for what it will do in case prosecutors come asking for personal health information. This could include encrypted information about embryos that have been created, used or discarded. Those preparations mean studying the developing legal landscape, connecting with legal experts and “having enough capital in the coffers” to protect against anyone who might come looking for data, CEO Paxton Maeder-York said.
“It really comes down to one, being prepared to fight those lawsuits with the money we have, and then understanding the local laws and jurisdictions in those states that we operate,” he said.
“To the extent that the law permits, we would like to protect the privacy of our patients, their personal history – and that’s under oath,” she said.
However, as the debate continues in internal meetings, not all companies are ready to go public with their approach. The majority of reproductive health technology companies contacted by STAT either 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 apparel maker Ava and virtual maternity care providers Oula and Wildflower did not respond to STAT’s inquiries.
What seems clear is that better communication around data practices will be a key point of distinction for users. Regardless of the level of threat to user data – less health-specific data sources, such as search history, texts, and website visits containing abortion information, may be more susceptible to be used in a lawsuit – companies are likely to be compelled to respond in a way that inspires confidence. The Roe decision has already led to dramatic changes in the download patterns of period-tracking apps.
Without improvements in data management and the transparency that comes with it, new companies could find a market opening, Savage said — for example, digital tools that encrypt reproductive health data with a key that only the individual user has, so an organization cannot be the target of a subpoena. And existing businesses could face a tougher business landscape.
“For a company operating in this space, it certainly creates risk as well,” Scherwitzl said. “If you’re looking for investor money, investors don’t like risk,” which in the long run could lead to less funding and less innovation in the already underserved women’s health sector.
“It’s all connected,” Scherwitzl said. “In the end, it’s not good.”
Mario Aguilar contributed reporting.