For those people interested in ethical questions surrounding the use of Twitter for mental health monitoring, the 2015 study published in the BioMed Central Medical Ethics Journal titled Ethical issues in using Twitter for population-level depression monitoring: a qualitative study is a good read.
Here’s a brief summary:
In this study, researchers held five focus groups mixed between 26 people with and without depression (self diagnosed).
The content of the focus groups centered around the use of Twitter as a monitoring tool for mental health.
I took away three points:
1. People do not fully understand the extent to which prior posts are retrievable. (For example, many people believe that a Twitter post deleted 5 years ago would not be retrievable, whereas in fact, deleted posts may be the type of information a third party may most want to retrieve).
2. There is a general understanding, reflected in this study, that using Twitter – a free broadcast channel – implied some level on consent for third party to use that data.
3. People are generally more comfortable with using data in aggregate to make observations about public health than they are at monitoring or identifying a specific individual’s mental health.
This was not a quantitative study, and with only 26 participants (mostly younger adult men) it’s hard to make any sweeping statements; however, the specific quoted comments do give a general feel of the tenor of the opinions of the participants. For this reason alone it’s certainly worth a read for those interested in the ethics of social media and healthcare monitoring.
In my mind, one thing this article does reinforce is a deep lack of understanding as to the extent to which social media platforms, can (and likely do) cross reference one’s online activities with one’s real life activities (such as physical location, credit card purchases, employment history, etc) to analyze someone for their own purposes.
This does raise a fundamental question for social media users (and interestingly one that often comes up in medical practice): What level of understanding is necessary to give informed consent?
Rephrased, are the only people who are able to sign a social media user agreement post- graduate PhD data analytics majors?
Anyway, when it comes to social media, healthcare, and ethics – let’s just say there is a lot to do!