Tracking your period: Data economy and the risks for privacy and security of (very) personal data
From Gender and Tech Resources
|Title||Tracking your period: Data economy and the risks for privacy and security of (very) personal data - Coding Rights|
|Category||Privacy Advocacy Gender and Tech|
":30-17h" can not be assigned to a declared number type with value 16.
|Geolocalization||-12° 34' 46", -41° 42' 2"|
|Target audience||AWID participants|
|Number of participants||15|
|Context and motivations||Fertility awareness methods have been known and practised by women since antiquity, and were widely used in the 20th century until hormonal birth control methods suppressing or controlling menstruation were developed. Historically, monitoring fertility expanded on the personal knowledge of one’s cycle and body, and has therefore been encouraged by some menstruation activists as a way to better understand and live their cyclic nature in a positive way. Mobile applications can now take on the role of monitoring a woman’s cycle2 and are amongst the most popular health applications in app stores. (excerpt from QUANTIFYING FERTILITY AND REPRODUCTION THROUGH MOBILE APPS: A Critical Overview, by Vanessa Rizk and Dalia Othman, at ARROW FOR CHANGE, vol. 22 no. 1 2016)|
|Topics||Data protection, Data capitalism, Trackers, Health,|
Going around and asking people if they use a tracker, or not, and why they chose to attend this session. (each letter below stands for a participant)
D: used a period tracker once when she got off birth control – used for a few months – didn't find it particularly helpful connecting my period to an app on my phone
O: never used tracker but knows people who do because their periods are irregular
E: so no need for period trackers but is very curious about the development of applications for this
M uses one, but only to research it; mentions what kinds of data were collected by Clue, which is also based in Berlin.
D: does use a period tracker but wants to know more about how it works.
W wanted to know: she knows nothing about apps but is very interested in data protection issues
D: experience of having worked on analysis of apps for the ARROW bulletin on SRHR, sexuality and the internet The research for the article lead us to question how much data (especially metadata) is being collected by these applications. Who the companies share the data with when they say third party organizations.
Going beyond the data, how the algorithms are developed and being used to process the data and what that means in terms of notifications sent out to the users. Is it based on data points collected from all the users and analyzed together? There is a lack of clarity how the data and notifications are pushed out to users and whether it's based on some scientific process.
Also added points to the research centers and what they are doing with the collected data.. elaborated on that issue in the discussion below.
M: The idea that a woman entrepreneur makes a period tracker, or any tech that is for women, somehow suggests that because a woman made or developed the app, it is somehow better and more ethical. Why are we so deterministic? Some women, as in the case of Clue, are just business women
Questions about membership and data sharing. Most of these apps are based on a significant data business model. They collect data for further resale and sharing. Only Clue allows the user to store data offline on their phone and not share it, or to share it via with Cloud.
M: Is the data being collected used to push messages to change behaviour?
E: what sort of collectivity do we want – we may want to know about what happens when we have pain, feel the craving for carbs, have sensitive breasts. The social and collective space is quite valuable for women, or at least knowing other women's experiences can be quite useful when shared. Maya shared that with the use of Clue, most popular among young women, enables a sort of collective sharing and discussion through the medium of the app. The information women have and share could be useful and it helps to talk to others – what kind of collectivity is being promoted through this? Is it on women's terms? Is collectivity being enabled or reduced through the app?
Ethical issues around collecting data through apps. Clue is an app that says it wants to share the data they collect with public health research institutes like Columbia University's School of Public Health in the interest of furthering scientific knowledge about women's health, a notoriously difficutt topic to research and collect data on. However, it is unclear what sorts of norms and guidelines govern this sort of research. How do Columbia and other universities rationalise the use of data collected in this way? What kinds of research ethics are in place for data collected through mobile phone apps in non research, ie not controlled setting? This process is opaque to users or anyone else.
O: is it possible that young women who already feel pressure to be normal will feel even more pressure to be normal? Is it a good thing in this day and age when young women face pressure?
D: Also talked about how free basics and Facebook is now adding similar applications for women who are not connected to the internet to access information and collect further data. How does that influence the overall global data being collected when apps move beyond well connected areas and women with smart phones to other countries in the world with limited connectivity. How do these apps and information influence these women. Also noted was the fact that Facebook requires all third party apps to share the data collected through them.
J: What if we start thinking about this differently. What does a feminist app look like? Maybe a feminist app would ask different questions, collect and share information differently.