Case 46. Confidentiality of Subject Data

Situation

Diagnostics, Inc. is a survey research firm that has been contracted by the state Department of Public Welfare to conduct a study of day care facilities throughout its five regions. This study involves randomly selecting 100 day care centers throughout the state and conducting sites visits at each one. During the site visits, observers will utilize the Harms & Clifford rating scale to assess overall quality of care at the centers; in addition, interviews will be completed with staff at the centers to assess organizational climate along with a set of other factors that are hypothesized to be associated with quality of care. During the sampling phase of the research, the day care sites are assured the confidentiality of their information. Guaranteeing confidentiality was essential, not only for ethical reasons, but because it ensured the centers' willingness to participate in the study. Care was taken to assign ID numbers to each of the sites and to instruct the field workers on the importance of confidentiality. Their obligations as researchers to preserve the information about the sites in a confidential manner was reinforced during the training period.

During one of the site visits, one of the field workers, Palmira Munoz, observed an infant sleeping in a crib next to an open garbage can. She called Diagnostics, Inc. to inform them of this and to determine if she was obligated to report this finding to DPW. 

Questions

1.    Was Munoz violating confidentiality by reporting her finding to Diagnostics, Inc.?
2.    If the Department of Public Welfare has paid for the study, doesn't it really own the data? If so, then doesn't DPW have the right to see all the details related to individual sites?
3.    Are there laws concerning the health and safety of children that require reporting to proper authorities, and therefore result in "null and void" confidentiality regulations?

     Reflect on the above questions and form your own answers before clicking the Discussion key to review the commentary provided with this case.

Discussion

Both the project officer and field worker are part of the research team of Diagnostics, Inc. As such, when Munoz called to report her finding, she was not violating confidentiality. Since all individual observations and completed survey forms are eventually returned to Diagnostics, Inc. for processing and analysis, all members of the research team will have access to this information. 

However, DPW as the funding agency, is outside of this circle. Therefore, information gathered by the researchers must be preserved by them in a confidential manner. Only data stripped of individual identifiers or summary reports belong to DPW. 

The observation of an infant sleeping next to an open garbage can does present a vexing problem. This is an unhealthy environment for a child and such practices could jeopardize the center's license. There are federal laws that require anyone to report instances of child abuse. And there may be "shades of gray" when it comes to labeling certain practices or behaviors as abusive, but in this instance, an infant sleeping in a crib next to an open garbage can is not likely to be considered child abuse. It is definitely poor practice and unsanitary, but not abusive. If Diagnostics, Inc. felt compelled to report this center to DPW authorities, they would be in violation of the ethical practice in research that requires the preservation of confidential information.