Should we have veto power over who sees and uses our data?

Forget for moment the predatory nature of various tech firms. As a citizen of a country aspects of my data get used for all kinds of statistics through civil registration and vital statistics (CRVS) department. CRVS data is used to help determine demand for schools, health facilities, type of health care, and so on.

The CRVS is often based on a sample of the population, not the entirety. And the sample are freely given. We had a CRVS officer come to our house last week. She gave us the option of saying no and we felt fully able to say no.

In some countries, in order to have a SIM card you need to provide information about who you are. You don’t have a choice.

So when we seek to serve a community in our humanitarian work or even our social services work, should the individual or some form of community member have veto power over what we do with their data?

It likely is partly rooted in if we view aid and social services as a right or a privilege. If a right, then there shouldn’t really be strings attached. If a privilege, well then strings are possibly more acceptable.

This is important to tease out as when we apply data trusts in our work, we need to decide on the voting power of trustees. It is important for the community to be represented in the trustees. But of course there will be power dynamics among the trustees. So do we give the community veto power? 51% of the votes? Require consensus?

It is data about them after all so what ‘control’ should they have over its use? If they were ‘purchasing’ the aid, would we view the data request differently?

This is not easy and it hits at the heart of the power issues we need to be discussing more. It also helps us tease out why do we need the data, what do we use it for, and is there another way.

What do you think?

Photo by Headway