Think twice: a reflection on menstrual data, privacy, and non-discrimination
While misuse of menstrual data in the US is the current worrisome privacy issue, awareness and understanding of the handling of one’s intimate information is vital to safeguarding human rights, and will only become more urgent as more and more data is collected and stored by various entities.
We tend to hand over our data frequently in order to get certain benefits. If you want to access the internet at the airport, you may have to enter your age and gender on a website. Or if you want to get a job, you may fill out a detailed Linkedin Profile or online application with your work and education history. Another, more concerning example, is an ongoing debate in the US about menstrual data. States are requiring young people to submit information about their menstrual cycles in order to play sports.
While misuse of menstrual data in the US is the current worrisome privacy issue, awareness and understanding of the handling of one’s intimate information is vital to safeguarding human rights, and will only become more urgent as more and more data is collected and stored by various entities. This analysis first describes the current debate surrounding menstrual data in the US. Next, it argues that the use of menstrual information indeed has the potential—in a changing human rights environment—to be used in violation of people’s rights to privacy and non-discrimination. Finally, it concludes by emphasizing the importance of this debate for the global community to understand in order to avoid the potential repercussions of turning over certain personal data to third parties and other authorities.
Why are women worried about their menstrual data in the US?
As someone who grew up in the US, I remember going through a physical assessment by a doctor each year in order to play sports in middle and high school. I had to disclose information such as when my last period was and other details about my menstrual cycle. This felt like very intimate information, but I wanted to play sports and it seemed worth it. I also assumed that my information would be safe with the physician.
Right now, concerns are being raised about whether schools in the US have a right to compel female athletes to provide information about their menstrual cycles. This information is solicited in medical assessments to ensure that women are healthy and able to participate in sports, since one’s menstrual cycle (or lack thereof) can indicate malnutrition, lack of bone strength, or other health issues. The debate around this issue exploded when the High School Athletic Association in the state of Florida introduced a proposal in early 2023 that would require female athletes to answer four questions, including “When was your most recent menstrual period?” and “How many periods have you had in the past 12 months?” This information would be stored on a third-party online database called Aktivate and accessible by school personnel in addition to the doctor.
This proposal sounded alarm bells across the country. The US is currently experiencing a resurgence of conservatism and a renewed vigor for restricting both gender and reproductive rights, described below. In this context, handing over your reproductive and sexual personal information is concerning since it could violate a person’s right to privacy or be used in a discriminatory manner, as discussed in the final section of this text.
In the end, this proposal spurred so much controversy that the Florida High School Athletic Association Board of Directors rejected it. However, the debate prompted research that showed “34 states ask athletes about their periods and require them to turn in the answers to their school districts during the annual registration process.” Some states store this data on forms that are kept on file at the schools. The American Academy of Pediatrics has recommended that the only information in this realm that doctors should submit to schools or sports organizations is an indication of whether they determine the student is medically fit to participate in sports.
Changing human rights landscape gives reason for concern
One major reason why menstrual data is—or at least feels—suddenly more compromising is the changing human rights landscape in the US. The following are a few examples of restrictions implemented recently regarding reproductive and gender rights.
One determinant of the gender and reproductive rights landscape in the US is the overturning of Roe v. Wade. Before the case was overturned in June 2022, women in the US could freely get an abortion without being criminalized. The case established that the right to privacy implied in the 14th Amendment of the Constitution protected abortion as a fundamental right. But as soon as it was overturned, states began to criminalize or completely ban abortions. Women who received abortions could be prosecuted if they live in a state that disallows it.
For this reason, amid concerns that information about their menstrual cycles could be used to identify and prosecute women seeking abortions, people became very concerned with this data and how it was used and stored. What was once a simple method to keep track of one’s period was now a potential source of data for authorities looking to police women’s reproductive choices, since many of these apps “offered unclear policies surrounding police warrants for user data or made no stance on such requests”. Women began deleting the apps off of their cellphones and ceasing to record their menstrual data for fear that this information could be used against them in a prosecution.
Menstrual data and privacy concerns
The collection, retention, and use of menstrual data could lead to a violation of the right to privacy if the data is required yet not securely maintained. In the US, the right to privacy is established as a constitutional right by legal precedent and 11 states have an explicit privacy right in their constitutions. For instance, in the Florida case, the state constitution stipulates that “all natural persons, female and male alike, are equal before the law and have inalienable rights,” (Section 2) including “the right to be let alone and free from governmental intrusion into the person’s private life” (Section 23).
There is a lack of precedent or previous experiences with a situation in which students’ medical records are shared with schools and stored on databases run by a third-party. If this type of data was required and not securely stored, privacy concerns could result. As a result of these privacy concerns, legislators have introduced a policy called the PERIOD Act, or the “Privacy in Education Regarding Individuals’ Own Data” Act that would ban federal funding for schools that require menstrual data from students.
Use of this data could result in discrimination
Finally, requiring that female students turn over their menstrual data could violate anti-discrimination laws. In the US, federal law prohibits federally-funded schools from discriminating against students based on sex, sexual orientation or gender identity. This policy applies to school athletics.
Another argument is that, since girls are the only ones required to submit their menstrual data in order to play sports, they are also the only ones that could be denied the opportunity to play sports if they choose not to submit this information. By depriving only girls of opportunities based on their menstruation data, this would qualify as sex discrimination since menstruation is a biological process linked to female sex.
Although this issue is currently controversial and debated in the US, the arguments and takeaways related to gender and human rights are universal. Sensitive information like one’s menstrual data can be harmless, but as this situation demonstrates, it also has the potential to be weaponized against certain groups.
Taking into consideration the human rights landscape of a place is very important when deciding whether to turn over personal information and data to public or private actors. Even if once deemed safe, the political context and protections afforded to certain groups can change in an instant; individuals should be aware of this volatility and protect themselves, especially from invasions of privacy that could deeply affect their lives.
In Florida, residents only became worried about requirements to share menstrual data with schools when women and trans people started to have their rights limited by legislation. In the case of menstrual data in particular, a few helpful solutions to these concerns would be (1) maintaining menstrual information with doctors, not schools and (2) not housing sensitive personal information like this on third-party databases without clear privacy policies that restrict the databases from sharing your data with others.
But these types of changes to peoples’ rights are hard to predict and beg the question: how can we remain vigilant about the data we choose to submit as more and more platforms ask for and maintain our data? How does the changing human rights landscape I live in affect my decisions regarding my personal data? The advocacy of civil society organizations around data privacy and an informed citizenry about the risks of sharing personal information is one positive step towards protecting ourselves and our communities.