New software safeguards research participants’ privacy

Source Domain: www.newswise.com

Which details in a de-identified scientific record are enough to still identify a person? If, for example, the record includes that a person is a CEO, the abundance of CEOs in the world would make identification nearly impossible. If the person is a CEO living in Missouri, the list becomes notably shorter but likely extensive enough to safeguard identity. But the name of a CEO living in St. Louis and working at a particular company is easy to figure out.

Some scientific research studies collect qualitative data — information provided through focus groups, surveys and interviews — that harbor potentially telling information, including cities lived in, work histories, personal anecdotes and other details. Privacy concerns have kept such data largely inaccessible to the wider scientific community and the public, with only the study’s researchers having access.

But now, a team at Washington University School of Medicine in St. Louis has developed software that flags sensitive information in interview text — such as where a person works or lives — making it easier for scientists to remove or modify identifiable details. Subtracting the risk of identifying study participants opens the doors to sharing qualitative data with other researchers and the public, which has several benefits, according to James DuBois, DSc, PhD, executive director of the Bioethics Research Center within the WashU Institute of Clinical and Translational Sciences.

“Sharing data can be critical for improving public trust in science,” said DuBois, who led the development of the software, which has become the De-ID App. “Greater access to data also supports new research with existing data, allows for verification of results, and provides teaching opportunities. Our software will guide researchers in the safe and ethical sharing of qualitative data that have historically remained hidden.”

DuBois developed the software with fellow researchers at WashU Medicine and other institutions….

Source