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Mining Of Social Media By DHS -- Another Hit To Public Health

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There's a new federal sneak attack on public health.

Engadget brought a chilling, expansive Department of Homeland Security policy to my attention. Beginning October 18, the euphemistically-named "Modified Privacy Act System of Records" went into effect. An expansion of previous policies, this enables DHS to collect and store "social-media handles, aliases, associated identifiable information and search results" in the permanent files of all immigrants—including permanent residents and naturalized citizens. DHS stores this information indefinitely, planning on transferring it to the National Archives.

Jonathan McIntosh

This is a chilling invasion of privacy and likely subject to abuse, as when the current regime demanded to know identities, e-mail and IP addresses of everyone who signed an anti-Trump petition.

What is not widely recognized is that many of us who use social media will be caught up in this dragnet for two reasons. First, the policy will also allow collection of "publicly available information obtained from the internet, public records, public institutions, interviewees, commercial data providers and information obtained and disclosed pursuant to information sharing agreements,” and inquiries or complaints from members of the general public, according to the Federal Register. So it is not “just” immigrants who are affected (not that that would be acceptable), but likely everyone who has ever associated in any way on social media with an immigrant.

If you have communication with an immigrant—even by a “like” on a social media, you will likely be caught up in this web. Same if you are listed in an on-line phone directory—which also often lists past housemates or “associates.”

Violet Blue further warns, “A close read of the document shows that finding out what is in one's file will be incredibly difficult, and correcting any bad info nigh impossible.” Remember problems people have had with the “No Fly” list? There’s no reason to believe DHS would be responsive to fixing further problems they create.

This sweep of social media data will likely drive people underground and complicate public health efforts. Social media is increasingly used to help in public health surveillance and messaging.

Use of Social Media and health

As of 2009, 39% of adults used social media such as Facebook for health information and 61% did on-line searches for health info. Facebook and YouTube can provide information for users who prefer or need low literacy resources. More and more patient advocacy groups like PatientsLikeMe share stories and experiences of disease and treatments. This becomes far more disturbing with recent revelations of how Facebook allowed micro-targeting of users to provide advertisements and disseminate misinformation to specific groups of people and to foment racial divisions.

Social Media and epidemiology

Social media is an invaluable tool used for public health epidemiology. It can be used for monitoring the beginning of flu season, for example, by monitoring searches for “cold” remedies and Google Flu Trends. Linking key words and location information from the user’s IP (Internet Protocol) address localizes the data. Harvesting Twitter key words, for example, can forecast the incidence of disease. HealthMap and Pro-Med mail are both invaluable in monitoring diseases and communicating their findings. Similarly, the GeoSentinel project and Emerging Infections Network provide surveillance for travel related illnesses and new cases during outbreaks.

CrowdRescue epitomizes the value of social media in emergency situations, with their volunteers who monitor Twitter and online news for people in trouble and direct first responders more efficiently. Similarly, during natural disasters and public health emergencies, social media can be used to pinpoint specific supply needs.

Social media has also been important in identifying outbreaks and relaying information during such situations, as with SARS. Interestingly, it has also been described as allowing “democratization of public health knowledge thus preventing government suppression of health emergencies.” On the other hand, identifying “fake news” is more difficult with certain monied interests focused on disinformation campaigns.

Social media also been used to assess people’s level of understanding and reactions to specific messaging. Isaac Chun-Hai Fung expands on these uses in a review for the WHO.

But on a darker note:

As the Electronic Freedom Foundation notes,

“Individuals’ First Amendment rights to free speech and association —particularly for naturalized citizens and lawful permanent residents—are chilled by the government collecting information about them.”

Collecting such data also enables mapping their social networks and tracking people’s movements.

This is not an idle concern. In February, the Department of Justice demanded information on about 6,000 individuals who “liked” an anti-Donald Trump Facebook page. It looks months of wrangling against a gag order for Facebook to even be allowed to tell the account holders of the demands. The warrant's demands included all private messages, friend lists, status updates, comments, and other personal information, and “all searches performed by the users, groups or networks joined, and all data and information that has been deleted by the user.”

A recent article about Tinder further shows the breadth of some of the data mining possible through our use of apps. At this point, the focus appears to be targeted advertising. One can readily imagine more nefarious uses.

Putting this into a public health context, it is not hard to envision that the Feds mining social media data would drive groups underground—be it gays, who Trump said Pence wanted to hang, or people with sexually transmitted diseases or any woman who has sought care at Planned Parenthood, let alone had an abortion. I remember the early HIV/AIDS epidemic days, when I wouldn’t even test patients through our hospital, fearing a confidentiality breach that would cost them their jobs, homes or lives. This misguided authoritarianism will drive us back to those days, if allowed to continue.

*Betty Price, wife of DHHS's former chief, Tom Price, and a Georgia state lawmaker, was just reported to have raised the possibility of quarantining people with HIV to curb spread of the infection. This perfectly illustrates the risk of outing people via social media spying.

It’s unclear how we can best defend against this growing threat of authoritarianism besides legal challenges, attempts to reclaim voting rights and verified voting and undoing gerrymandering. What other suggestions do you have?

*post updated to add this new information.

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