Companies collect—and sometimes share—intimate menstrual data from millions of people
This story is the second in a two-part series on digital contraception. Read part 1 here.
After companies capitalized on an underserved market for women’s digital health products, a small but booming market “Femtech” Industry has emerged in the last decade. This includes a variety of menstrual tracking apps that use artificial intelligence to predict future periods and dates of ovulation. Of these apps, only Clue and Natural Cycles have been cleared by the FDA to be advertised as birth control.
To take advantage of these benefits, users divulge very intimate information. Today, this personal data of millions of people is often collected and stored by the private sector and in some cases shared with other companies. Technology groups have already shown their willingness to share them Details with advertisers: Out of a sample of 24 health-related apps, 67 percent shared user data with third-party sources (for marketing and analytics), which could then share the information with over 200 “fourth-party” companies, according to a 2019 BMJ to learn. These companies may include multinational tech companies like Facebook or Alphabet, Google’s parent company.
Intimate dates for sale
As privacy advocates have pointed out, information gathered by pregnancy planning apps is particularly revealing. According to reports from 2020, the data may include whether someone is having unprotected sex, their masturbation habits, their drug use, or if they are trying to conceive Digital Lab by Consumer Reports and the UK-based non-profit organization Data protection internationally. Some of this intimate information was shared with third parties, Privacy International revealed, building on results from the previous year.
Depending on where your data ends up, this practice can have direct consequences. Misplaced health information could, for example, skyrocket your interest rates and life insurance costs, and even put you at risk of discrimination in the workplace, according to Consumer Reports written down, but those affected may not even know it’s happening.
Inspired by a groundbreaking European Union regulation, some states have enacted laws to give users more control over their data: the California Consumer Privacy Act, for example, went into effect last year and permitted Residents to delete personal information collected by businesses (with certain exceptions) and to opt out of its sale. 2023, similar legislation will go into effect in Virginia and Colorado, although The Markup has done so reported that the tech industry has been shaping laws across the country to avoid stricter rules.
Natural Cycles is now planning to integrate wearable devices like the Oura ring, which measures heart rate and temperature, into its app and could expand the amount of user data collected. While Natural Cycles boasts of its ability to passively sense temperature, Marielle Gross, bioethicist and OB-GYN at the University of Pittsburgh Medical Center, questions that “non-invasive” Disclaimer now attached to devices like Oura. She has watched as a growing collection of wearables attempt to simulate in-person doctor visits, possibly even surpassing the intimacy of traditional patient-doctor boundaries. “For me, to say that it is non-invasive is a misunderstanding of what it means to be invasive,” says Gross.
Call as a doctor
Contraceptives or other menstrual tracking apps lack some of the legal protections that come with traditional birth control methods. For example, if a doctor suggests an unsuccessful sterilization procedure, they may be sued by the patient. People have too legal action initiated against contraceptive manufacturers because of packaging errors. But even if apps themselves fail, those who experience unwanted pregnancies likely don’t have the same remedies.
“[Doctors] have extremely strict, specific requirements for training and ongoing accreditation,” says Gross. “We’re accountable for the outcomes our patients experience, and there’s a level of accountability that these apps don’t have.”
Additionally, the sensitive data that goes into your phone isn’t subject to the Health Insurance Portability and Accountability Act (HIPAA), which doctors are required to comply with — and, as mentioned above, can be used for profit.
data for science
On the other hand, the vast amounts of (anonymized) reproductive data being collected from users around the world could revolutionize research into women’s health.
For decades, clinicians have followed guidelines that say the average menstrual cycle is about 28 days — an estimate based on a handful of small, demographically limited studies — but have since influenced gynecology textbooks and physician decisions, says Gross.
But a study based on data from over 120,000 Natural Cycles users supports the long-held theory that cycle lengths vary widely between women and even within individuals. ONE 2019 npj Digital medicine article, seemed to contradict the popular belief that ovulation usually occurs on the 14th day of one’s cycle. Their work also added evidence for the hypothesis that cycle length decreases with age. (Notable: The study was co-authored by several researchers with financial interests in the company.)
“We have never had so much data on the time of ovulation. There is a lot to understand about what is normal and abnormal.” says Rachel Peragallo Urrutia, a gynecologist at the University of North Carolina School of Medicine. “In the future, we could use different types of cycle tracking to better understand diseases like endometriosis.”
Clue has also used big data in the name of science: a Article from February 2021 in nature of human behavior processed information from over 3 million users around the world and showed that vital signs, mood and sexual behavior can change during the menstrual cycle. The company was also involved in a preprint study examining this seasonality of human birth, and external researchers used the app to analyze the influence of the menstrual cycle on the performance of collegiate athletes.
While recognizing the value of such research, Gross notes that it reflects people’s lived experiences that have long been overlooked by the medical profession. Likewise the Apple Women’s Health Study, which pulls health data from the subjects’ iPhones and Apple Watches, seems to confirm the ubiquity of common symptoms like bloating and cramps.
“Digitizing this qualitative, subjective information from a person’s history or experience was a way to legitimize what we already knew to be true,” she says. “We should be aware of the implications of putting a number in a scientific and algorithmic way that somehow creates the illusion that it’s more robust…in some ways it might be, and in other ways it might not be.” .”