What Happens To Your Medical Data After You Die?

How familiar are you with your digital health data footprint? Do you even know what kind of health data is generated about you and where it is stored? And what happens with this ever-growing pile of information after you die? Who owns this data and who can get access to it? Why could this even be interesting and for whom? We have dived into the mainly overlooked area of posthumous medical data and almost got lost. Here are our findings but just a heads up: it’s messy and complicated.

Little digital breadcrumbs everywhere Just as Hansel and Gretel dropped little breadcrumbs along the path in the forest to be able to find their way back home, we leave tons of tiny digital breadcrumbs about ourselves in the digital universe. Facebook posts, e-mails, signing up to newsletters, cookies following our search history, interests, and preferences. The data piles up to form a unique digital identity. The online space stores everything and never forgets. Sometimes that could be pretty awkward when it comes to stupid actions done in the past that you want to rather forget and delete. The European Union even put in practice the concept of the right to be forgotten – for cases when certain unfortunate matters done long ago would unduly stigmatize someone for years.

And what happens with the digital identity after someone’s death? As it certainly creates awkward moments when Facebook signals the birthday of a deceased friend, for example, more and more people realized that the digital era has reached a point when we also have to deal with the digital afterlife. However, so far, it has only created weirdness and confusion. You have online memorial services, companies who help you plan your digital death and afterlife, or even re-create algorithms to make a “digital back-up of their mind”. But by far the creepiest one is Eternime, founded by MIT fellow Marius Ursache, which seeks to provide comfort using digital avatars and chatbots. If you give the venture access to your social media profiles, the startup’s algorithms will scrape your posts and interactions to build a profile – they will learn how to be the online version of “you”. Then the avatars could eventually interact with your loved ones. Think about it: your grandchildren could converse with the online version of you 40 years from now. Pure Black Mirror.

Nevertheless, you not only leave little data breadcrumbs all over the social media space or the Internet in general. As we are usually interested in what happens in the healthcare space (surprise, surprise), we looked around what happens to your (digital) health data after you die.