Data is power, and responsibility: what we believe as Clue’s Co-CEOs
Now more than ever, accessible, data-driven technologies must serve individual empowerment and health equity, not reproductive surveillance.
The recent overturning of Roe vs Wade has not only changed the landscape of reproductive rights in the US, it has also, like the original decision, brought privacy to the forefront of our minds and conversations. But unlike the world of 1973, the fear of widespread, tech-enabled reproductive surveillance looms large in the current public discourse. Today, our data is everywhere, informing every connected tech service we use. Health tech, too, is becoming smarter and more pervasive, promising a world of personalized diagnostics and treatments that will be informed by ever larger quantities of data.
We’ve long known that information is a determinant of health. Healthcare providers know that people need to be well-informed to achieve good health outcomes. They need to participate in setting their own health goals and priorities, monitor their conditions, and communicate how they feel. Nowhere is this more true than in female reproductive health, where every life stage includes extremely varied individual experience. Think of how differently even sisters can experience their periods, or being postpartum, or perimenopause. Think of how differently you may have felt at your first birth, as compared to your second. There is hardly any “normal”, and one woman’s healthy pattern may point to a dangerous change in someone else’s.
Self-tracked data for self-insight and self-advocacy
To benefit from insights into one’s own unique patterns and changes, keeping an uncensored record is critical. Whether the goal is understanding cycles of pleasure or honing in on something that feels “off”, we must first externalize a very personal experience. Every day, we hear from our Clue user community about how often the healthcare system fails them when it comes to taking their reproductive health experience seriously - how it marginalizes their pain, brushes off their symptoms, disregards their intelligence, and denies their agency. And we also hear from them how empowering their self-tracked health data can become in these interactions. It turns a very intimate, hard to articulate, lived experience into quantifiable observations. The ability to understand and present what you observe in your body as data can be incredibly powerful for self-advocacy, self-management and self-acceptance. It can be the difference between taking control or giving up on ever getting care (our Chief Medical Officer, Dr. Lynae Brayboy, talks more about this here).
Closing the gender gap
And there is an even bigger picture. The potential of reproductive health data goes beyond empowering each of us individually. For the first time in history, big datasets about the female cycle can inform health research to close the gender gap – the result of generations of scientists assuming the default human to have male physiology, and a historically male gaze on female health conditions and reproductive justice. This is why contributing to the body of knowledge on female health is a key value at Clue, and why we believe so strongly that our de-identified dataset should contribute to closing these gaps (read more about our scientific collaborations for female health here, as described by our Head of Science, Amanda Shea PhD).
Governments should step up to protect reproductive health data
For all of these reasons, it is critical that reproductive health data is kept private and safe. Ultimately, it is the accountable governments of free countries who should ensure this is the case, by creating a regulatory framework that guarantees the protection of health data against misuse, and helps consumers understand which apps actually work. In our view, some of the most effective regulation would:
Protect sensitive health data against disclosure for use against the data subject as a fundamental right–a right that cannot be assigned away in small print or overridden by authorities;
Require companies processing data to be transparent to their users about how they make money, in plain language, and specifically whether the sale of personal data is part of the business model (see our business transparency statement here);
Require currently unregulated Health & Wellness app companies to state explicitly what their health claims are, whether there is any published evidence for them, and whether they have received any independent verification for a particular use;
Finally–and this is a balancing act in the public interest–it would allow companies reasonable technical flexibility, so as not to stifle much-needed innovation in data-driven health tech.
Good regulation is hard, but these goals would be a good start. They should be uncontroversial to everyone–regardless of their specific views on abortion, or reproductive rights more broadly. Enhancing self-knowledge is always a good thing, especially in female health. And that requires a safe and private space for self-exploration.
Our Clue community spans the whole world–unsurprisingly, since half of humanity has cycles and a female reproductive system. Right now, we have users from Antarctica to Tuvalu, from Germany to Ukraine, from the US to Afghanistan. Not everywhere are women equal under the law. Not everywhere is there a right to liberty, or bodily autonomy, or reproductive choice–or to privacy about our most intimate experiences.
But we, as a female-led health technology company, will do our part. We will ensure that the health data we hold is put to work only in the service of health. We will not cooperate with any government authority to instrumentalize people’s health data against them. We will continue investing in data privacy. We will continue to work hard to give people the most helpful, most empathetic, most empowering data-driven tools that we can build–and make them as accessible as having a smartphone.
We are building technology that we want our friends, our sisters and our daughters to use, with curiosity and peace of mind. We commit to leveraging the vast power of tech and big data towards greater agency and health equity, not reproductive surveillance.