They also promised that the children’s sensitive data would be closely guarded in the decade-long study, which got underway in 2015. Promotional materials included a cartoon of a Black child saying it felt good knowing that “scientists are taking steps to keep my information safe.”
The scientists did not keep it safe
In a statement, Lyric Jorgenson, associate director of science policy at the N.I.H., said the agency had taken steps to protect the ABCD Study. It has introduced a new online portal requiring users to complete training on responsible data use and to “pass a knowledge test prior to accessing the data.”
In response to the fraudulent access by a Chinese researcher, she said, the N.I.H. “made enhancements that will prevent this type of incident” from happening again.
“N.I.H. has a longstanding commitment to make the results of N.I.H.-funded research available,” she said, noting that it has approved more than 92,000 access requests since 2007. “At the same time, N.I.H. takes the protection of all human data very seriously and has numerous safeguards in place.”
But the Government Accountability Office, a federal watchdog, reported last April that the N.I.H. did not have the resources to properly monitor all the downloads of genetic data and “may be missing violations that go unreported by researchers.”