Protecting women's rights from the surveillance risks of fertility apps

In a context of demographic decline, algorithmic surveillance of reproductive health could be used to covertly control reproductive decisions, increase inequalities and violate women's rights.

The Reproductive Health under Algorithm Surveillance (THELMA) project conducted at the Universitat Oberta de Catalunya (UOC) investigates the repercussions of femtech's algorithmic surveillance of reproductive health. These technologies, which focus on women's health, could use big data to influence reproductive decisions. This industry, focused on personalized well-being for women through digital technologies, mobile apps, and connected devices, could surpass a market value of $50 billion by 2025.

In particular, the research from the UOC wants to contribute to enhancing the current state of fertility data and digital surveillance in the EU, with the focus being on the experiences of end users. Combining social science methods with legal analysis, this multidisciplinary project is led by the Gender and ICT (GenTIC) research group at the Internet Interdisciplinary Institute (IN3), which focuses on gender studies in the digital age.

"The project's combination of quantitative research and theoretical legal knowledge will contribute to the EU study of fertility data," explained Luana Mathias Souto, who will apply her wide-ranging academic background to her work as a principal investigator in the THELMA project. Souto, who has a Ph.D. in Law from the Pontifical Catholic University of Minas Gerais in Brazil, is a lawyer and researcher specializing in constitutional law, human rights and gender studies. Her doctoral thesis focused on the effectiveness of women's political rights. She has just joined GenTIC and will develop the project over the next two years.

Violation of rights and bodies as a commodity

The idea for THELMA came about due to the possibility of a dystopian future for female reproduction, explained Souto. "When I began my studies in Gender and Law in 2018, one of my most relevant publications was about women's bodies and their right to make decisions about them, based on Margaret Atwood's novel 'The Handmaid's Tale.'

"I returned to those panoptic –mechanisms of surveillance and control that allow observing and regulating people's behavior without them knowing if they are being observed at any given moment– and dystopian ways of controlling people's bodies during the pandemic, and especially apps designed to track people. I began to worry about it a great deal, and I thought: What could happen if they start tracking women's fertility data?" the expert recounts.

She found several studies that analyzed various violations of rights by the femtech sector, including gender bias, the reinforcement of stereotypes, the use of data without consent for profit, and even unwanted pregnancies. "The industry hasn't examined the problems from a biopolitical perspective," said Souto.

Biopolitics is a philosophical theory developed by Michel Foucault in the 1970s, which places human capital at the center of the enrichment of modern societies. Female bodies are considered a commodity due to being able to reproduce that capital.

"If we take population decline into account, reproductive decisions will also be a concern for national governments. The risks related to femtech will increase because they store female reproductive data, such as information about ovulation and sexual behavior, and there is, as yet, no gender-sensitive legislative framework," she added. These data are often shared without the users' express consent, which raises serious privacy concerns.

The risks of using reproductive data

Instead of storing women's health data locally and securely, tech companies can use this information to generate statistics and make decisions without their users' consent. This is a cause for concern in a context in which women's reproductive rights are under threat in a number of countries. According to the researcher, recent cases in Europe and the United States have shown that data from fertility apps are being used in legal proceedings, compromising the users' privacy.

Prior to the advent of femtech, fertility data were only known to the patient and their doctors, and were protected by medical confidentiality. However, the apps don't employ privacy measures, "which means that for the first time in history, there's a massive amount of reproductive data that can be accessed by governments, private companies and other people," she explained.

In the United States, for example, a woman's fertility data stored in an app could be used against her as part of a criminal investigation in states where abortion is illegal if she had an abortion in another state where it was legal. Souto also pointed to another case in Sweden, in 2018, when users reported 37 unwanted pregnancies arising from use of the world's first contraceptive app.

The objectives of THELMA

The THELMA project aims to address four key issues: the characteristics and main agents in the femtech sector; the risks and benefits for users of femtech in the EU; the loopholes in the current legislation; and what an effective regulatory framework for this sector should look like.

It aims to contribute to creating a regulatory framework in the EU, which protects users' privacy and autonomy, based on interdisciplinary, intersectional and gender-sensitive approaches.

In order to achieve these goals, THELMA combines methods from social science and legal analysis. The project will organize groups of legal experts, activists, and tech designers to understand the challenges in the sector, conduct user surveys, and follow the principles of open science so that all results are publicly accessible under Creative Commons licenses. The educational material arising from the project will be made available to the public to empower users when making decisions about their reproductive choices and help them avoid the risks of femtech.

The project also empowers women. As Souto says, "Knowledge is power. For most women in the world, their bodies, hormones and sexual activities are still a taboo subject. Femtech marketing involves enabling women to know about their body, enhancing their well-being and self-control. These apps tell you why you are feeling more emotional today, if your period is late, when to have sex if you want to get pregnant and, likewise, they can also be used as a form of contraception—a non-invasive solution for women who cannot take the pill."

In short, the main objective of THELMA is to inform women about the value of their fertility data.

Provided by Open University of Catalonia