A new report from the National Academies of Sciences, Engineering, and Medicine (NASEM) encourages researchers to give back data to the people whose DNA samples produced it in the first place. The idea of returning genetic data has been increasing in the last few years, particularly due to the expansion of DNA sequencing that identified unforeseen results. An example would be finding gene mutations that predispose someone to a certain type of cancer unrelated to the study the volunteers participated in. The hope is that returning the data will give participants a voice in the research of their own biospecimens.
It’s important to note that this report states “the return of individual research results is one way to engage and show respect for research participants; however, the risks—such as returning unvalidated or poor-quality results—and associated burdens on the research enterprise are competing considerations that need to be balanced.”