top of page

Privacy in the Huntington's community amid Facebook data woes

For many of us in the Huntington's Disease community, privacy is a huge concern. While many of us, including myself, post freely on social media sites, such as Facebook, our day to day routines in dealing with this disease, posting pictures and videos of ourselves and our loved ones there are some in the community that for many reasons do not. Those reasons are legitimate causes of concern, ranging from fears of insurance termination to employment-related issues.

Their fears, we have come to find out in the last week, were not unfounded, with the Facebook/Cambridge Analytics fiasco, where Cambridge Analytics used data from approximately 50 million Facebook accounts for reasons that are not yet clear. Many are guessing that it was being used for political campaigns in the U.S.

So what happened and how did Cambridge Analytics gather this information?

According to Digital Trends, a portion of the data came from an app that accesses your Facebook profile when you click on it. You may have seen them on your newsfeed as a quiz or one of those questions asks - "What state should you be living in?" When you click on one of these sites, it asks you if it can access your profile, your pictures, etc. and then proceeds to tell you the answer and you can post it to your personal page. Only about 270,000 people accessed the app in question which was entitled "Thisisyourdigitallife" but this is where it gets to be a concern. The app didn't stop there. Instead, it accessed your "friends" accounts as well and also their friends until it had mined the data from millions of Facebook accounts. It didn't matter what you set your privacy settings to. And to make it worse, Facebook was aware of the breach in 2015, but it was not made public until a Canadian man who once worked for Cambridge Analytics came forward as a whistleblower.

Facebook will be rolling out a tool on our newsfeeds in the next month to allow its users to view what apps have access to their data and allow you to keep or get rid of some apps altogether so keep your eyes open for that.

What about Huntington's Disease support groups? Is my data safe?

Most of the support groups on Facebook are groups and not Facebook Pages. Facebook pages show up on search engines such as Google and posts are visible to anyone. Facebook Groups, however, have different levels of security, Public, Closed or Secret. To see who can join Facebook Groups and what people can see if you are a member of any of these groups you can check here. It is important to note that even if a group is closed or secret, a member of that group has the ability to take a screenshot of your post and repost it publicly. Members of these groups should be asking their admins what the security selection is on the group and if they ask security questions to enter the group as well as how often the group is monitored for bad behaviour. Rules of the group should be pinned to the top of the group's newsfeed.

Being a member of any of these groups does pose a risk to the security of your information. A breach such as what has become evident in the past week would show that you are a member of that group and would also let third parties know information such as how long you are on the site at any given time.

How can you protect yourself?

Don't access third-party apps, such as the ones mentioned above, but even games can pose a threat, so keep it to a minimum. In the Facebook Groups you belong to, get to know the admins and see how they handle members that make themselves unwelcome. Support groups are meant to help those who may not have another outlet to talk about common issues and to get advice so I wouldn't stop using them at this point since Facebook is losing money on a grand scale which means this will likely be fixed soon.

bottom of page