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Trouble on the Horizon

Title: Trouble on the Horizon


Author: James M. DuBois and Angela Dunn


Description:

Administrators at a rehabilitation facility for teenage girls want to report the success of their programs in a regional adolescent health journal. However, data were originally collected as part of treatment and not for research purposes, and there is risk of certain girls being identifiable.


Headings: Privacy and Confidentiality; Anonymous/de-identified data; Other privacy or confidentiality issues


Case Type: Decision Making


Trouble on the Horizon

Horizon Ranch is a “boot-camp” type of facility that advertises rehabilitation for delinquent kids. The facility is specifically tailored to teenage girls with at least one drug use and possession charge. As a smaller facility, they can take up to 50 girls. Located in rural New Mexico, Horizon is partially funded through the state’s juvenile offenders system. In order to sustain their funding with the state, they must submit regular progress reports. Typically these progress reports focus on the operational processes of the Ranch.

The administrators at Horizon decide to take these progress reports to the next level, and mandate a quality assessment study using patient records. Having compared the mental health and behavioral status of the girls upon entry to the ranch to after the girls receive one year of treatment, the administrators find a markedly high success rate of “rehabilitation”. Wanting to submit their results for publication the administrators draft an article for submission to New Mexico’s leading adolescent health journal. Upon admission, the girls had to sign a blanket consent form that would allow their records to be used for regular progress reports but not explicitly for any other purpose. Although key identifiers were not used in the article, the description of some of the girls’ behavioral and mental health status upon admission contained information that was highly identifiable. In these cases, the girls were from small towns and reports of their initial arrests made the local news headlines. The girls were told that sessions with the Ranch counselors would be kept confidential. The state’s IRB insists that the administrators obtain written consent from each girl whose records are to be used in the article. Indeed, all of the girls from small towns refuse to have their records reviewed. The results still favor the therapies used at the ranch, but are skewed due to the missing information from those who did not consent.

The pressure is on to get these results to press and to submit them to the state for future funding. The administrators return to the IRB and ask to report their results without the girls’ consent. They argue that the blanket consent admission form gives them the right to publish without specified consent.


Questions

  • As a member of the IRB, do you allow publication submission to go forward?