N. Engl. J Med. 378, 2202–2211 (2018)

Ninety-two percent of participants of clinical trials perceive that the benefits of sharing their participant-level data outweigh the negatives.

There is a global trend toward sharing data from clinical trial participants for further analysis. Despite researchers’ perception that trial participants are concerned that their privacy may be compromised if they participate in a clinical trial, participants’ opinions have not yet been studied.

In a study led by a health law researcher, 771 clinical trial participants from three academic medical centers in the United States were surveyed. Most participants responded that, provided that appropriate safeguards are in place, they are happy to share their data for a wide variety of purposes.

The survey indicates that the fears of clinical trial investigators and sponsors may be unfounded.