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Preventing the Misappropriation of Women's Health Data

-- By NishaChandra - 06 Dec 2019

Violations of data privacy affect nearly everyone who ventures online. But because of how women understand and use the internet, their health data is more vulnerable to collection. According to research from Pew, women value the internet as a way to strengthen relationships and build social connections, whereas men value the internet for its ability to cultivate experiences. Because of this difference, women are more likely to use the internet to get support for health or personal problems

This sort of essentialist arithmetic is rhetoric, not social science. The underlying data no doubt shows that there is more variation within the categories of "men" and "women" than between them. Divining a personality difference attributable to sex from the reported fact that 94% of women and 88% of men reported using email on a daily basis is imprudent, to say the least. Making this reported difference a "cause" of other phenomena perches unsound inferences on stilts.

Women may seek out this support online in different ways. For example, women might share personal details or ask for advice on internet groups. Some forums, message boards, and social media groups have subject matters which are stereotypically more interesting to women, and these groups by design encourage the dissemination of a certain type of personal information. Forums about wedding planning or miscarriage lend themselves to discussion about personal health and family information more than forums about video games or skiing. Additionally, there are smartphone applications designed for women that encourage users to upload their health information. There are a multitude of applications centered around reproductive health, for instance, where users can record their menstrual cycle, birth control methods, and health symptoms.

The Issue With Sharing Health Data

The problem is that the corporations which host these online groups are gathering and saving the data that users provide. And the data that users are uploading onto applications on their personal smartphones isn’t safe either. The Maya period tracker application, which has over 5 million downloads on the Google Play Store, was recently found to be sharing its users’ data with Facebook.

Why, then, does any of this depend on distinguishing between "women's health data" and "human health data"? What is the actual significance of the division to any issue of data policy?

This health data can be used in a multitude of ways by corporations. Health information, for example, can be used to suggest purchase options through targeted marketing. A company which knows that you’re struggling to conceive might show you ads for fertility clinics or self-help books. Through this type of marketing companies influences the behavior of users. Health data can also be sold; Facebook is interested in collecting health data in part because of the lucrative practice of selling this data to pharmaceutical and insurance companies. Unfortunately for users, health data in the hands of these companies will inevitably lead to discrimination based on that data. Insurers may start making health insurance coverage decisions based on the data they’re buying from these behavior-collectors. A post about depression made on a forum may lead to a woman being denied health insurance due to “pre-existing conditions”. One day soon, companies will use this data to make decisions that affect every facet of women’s lives – decisions about who to rent to, who to give a loan to, and who to hire.

Why will these things happen to women and not to men, children, and others?

Imperfect Solutions

The solution to this problem is for women to stop giving their health and personal data to companies. One option, perhaps an unsatisfying one, is to move many of these personal conversations off-line and into real life. Women might be turning to the internet to discuss their health and personal issues because of feelings of social isolation. If women feel like they can discuss issues with friends, families, or professionals they may not look for support online. Instead of using a smartphone application to track their health, women could write that information down and share it with their healthcare provider. Women looking for support in dealing with a health issue could find other similarly situated people in their community to talk to. Governments can aid in the increase of social supports by increasing funding for in-person support groups and community programs.

Another option is for women to continue sharing online but cut out the middle-man who is collecting data. Women could instead host their own web server on which forums can reside. Users could also use a federated peer-to-peer system to share information which would then be stored on individual drives rather than a tech company’s server. Companies like Facebook offer a centralized system for users to share information, but a federated system would work equally as well. The end result is the same – an online space where women can discuss their personal or health issues and get support from a community of like-minded individuals. But this system doesn’t have any spying and data harvesting built into it. One challenge may be getting users to actually use these systems. Studies have shown that although women are at least as concerned with data privacy as men, they are less likely to use data protection methods due to a lower level of technical privacy literacy. Increased education about potential methods of data protection would allow women to make more informed decisions about how and where they’re sharing their information online.

Even if women do move toward federated services, if the forum or online group is accessible to the outside public in any way, the data users are sharing could still be vulnerable. There are firms that specialize in “data scraping”, which is a practice of harvesting personal data and details from online sources such as blogs, websites, and forums. Firms can easily and cheaply use software to scrape data from websites and then sell the data to corporations. Scraping isn’t limited to publicly available data either; one firm made accounts on a forum so that it could scrap data from a private message board where users discussed emotional disorders. The only way to truly keep data private in online groups seems to be a heavy vetting process to determine which users can access the group. Unfortunately, this may result in the filtering out of some women who would have been beneficial members of the community.

I don't understand this analysis. Scraping requires access. If people are communicating using wikis, fora, or other web objects which limit access to those who belong, what is there to scrape?

This doesn't seem to have anything to do with "health data," let alone "women's health data." The issues of privacy in chat don't depend on whether people are discussing sex, religion, money, real estate, their children, their health, their sports teams, music, theater, books or paleontology. It's hard at this point to tell what the actual subject of the draft is.

Medical data is not mostly conversation. Patient records, medical histories, test results, images, coding and billing data---all are far more valuable, sought after, significant, important, dangerous than the Q&A on disease websites or advice mills. Why would we focus analysis on the least of the material, rather than making an effort to understand the ecology at large?

Conclusion

There is no perfect solution that allows women to continue to use the internet to get support for personal and health problems from a broad community while also protecting the privacy of their health data. But with an increased understanding of the options available to them, women will be able to decide how to best mitigate the risks.

In order to have a "perfect" solution one needs at least an adequate definition of the problem, which this draft doesn't provide. One could address the problem of privacy in chat with a TOR browser and a pseudonym. But chat is so little the issue that the effort to discuss this detail out of the context of the whole is misinformative even if accurately conducted. The best route to the improvement of the draft is to deal with the health data ecology more broadly: what is medical data, where does it come from, where does it go, how much do patients know about or control any of it?

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