Question from today's small sample size call

Based on today’s call…“Please discuss the ethical issues of using data that people didn’t know was being used for another or different project than the one for which they provided”


Thank you for following up with this fabulous question! :raised_hand_with_fingers_splayed:t4:

This is an essential aspect to consider whenever we’re using data that wasn’t directly collected by us - whether to supplement a small sample size or for any other reason. I think about this as a question about informed consent and data relationships. Every dataset exists as a series of data relationships that have agreements about price, value, ownership, and profit.

Whether or not we can or should use data that was collected for a different purpose is a decision made based on the alignment between the values we hold for this data project and the data relationships in the data we’re considering using.

Depending on where you live and work, a narrow legal perspective might say that as long as the secondary use of the data (“secondary use” is the term that is often used to mean using data for a project other than the one it was initially collected for) is within the legal consent that went with the data, then we’re good. However, from an equity and justice perspective, we need to think more deeply about things such as whether we can go back and get secondary consent from participants, whether the data is from a large anonymous and publicly available dataset or a smaller private dataset, what the potential value and/or harm to participants is for the “off label” use, and how we might ensure that we are giving back profit from this new use to the original data sources.

At the very minimum, we need to ensure that there is full transparency about what we are choosing to do and why.