Returning data to study participants — the pros and cons
Research subjects provide a tremendous service to subjects, at a sometimes not-negligible cost, in terms of time and inconvenience (and potentially needlesticks, radiation exposure, etc.) to them. Some research procedures may yield information important to the participant’s health, or that could minimize that person having to have the same procedures done as part of their regular care. On the flip side, however, are at least two concerns that are kind of in opposition to each other. Some subjects may not be able make sense of individual data without the proper context. Others may be savvy enough to use individual results to figure out if a particular intervention is working for them, and may drop out of the study if it isn’t.
Given these potential benefits to subjects, should researchers routinely give participants their individual research data? A recent article in the online journal STAT addresses some of the considerations that play into the decision regarding whether to provide results. Please click on the link to find out more.