Tim Spector and Barbara Prainsack
Originally published January 5, 2018
Here is an excerpt:
Health researchers working with human participants – or their identifiable information – need to jump through lots of ethical and bureaucratic hoops. The underlying rationale is that health research poses particularly high risks to people, and that these risks need to be minimised. But does the same rationale apply to non-invasive research using digital health data? Setting aside physically invasive research, which absolutely should maintain the most stringent of safeguards, is data-based health research really riskier than other research that analyses people's information?
Many corporations can use data from their customers for a wide range of purposes without needing research ethics approval, because their users have already "agreed" to this (by ticking a box), or the activity itself isn't qualified as health research. But is the assumptions that it is less risky justified?
Facebook and Google hold voluminous and fine-grained datasets on people. They analyse pictures and text posted by users. But they also study behavioural information, such as whether or not users "like" something or support political causes. They do this to profile users and discern new patterns connecting previously unconnected traits and behaviours. These findings are used for marketing; but they also contribute to knowledge about human behaviour.
The information is here.