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Privacy and digital collections

Posted by Librarian/Information Professional on December 1, 2008

This semester I have been inundated with articles and WebPages. I am not complaining, because I found a lot of useful information in the deluge. One such article proved more thought provoking than anticipated. This article is about privacy and research on health conditions that may exist in family groups. My paper was about genealogical files, so this article didn’t seem to relate at first glance.

Yet something compelled me to read it, and I could not put it down. Cook-Deegan discusses the issues of confidential information being disclosed about family to researchers. As the family files were built, secrets were disclosed about family lineage. Since the research was being conducted about a condition, the researchers hoped to publish it. Some family members objected to publication for various reasons, even though the persons who were actually involved in the situation gave their permission. It becomes a matter of ethics and privacy when disclosure is sought. How that question is answered depends upon the researcher.

Genealogical files that are”simply family history,” if there is such a thing, contain gems like Cook-Deegan describes. Some examples: Children who are adopted and don’t know it. Previous marriages that have not been disclosed. Other “family secrets” that might be OK to tell in a family gathering, but not broadcast in a global forum such as the Web. These are important issues that digital collectors should think about when writing about family history. There are no easy answers.

Cook-Deegan, Robert Mullan. 2001. Privacy, families, and human subject protections: Some lessons from pedigree research. The Journal of Continuing Education in the Health Professions 21: 223-237.


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