The issue of whether genetic information or material can be considered identifiable prompts a great deal of discussion among researchers and IRBs. On the one side are those who believe that nothing is more uniquely identifiable than an individual’s genetic information. On the other are those who say that genetic information by itself cannot readily be linked to individuals without access to a key linking the information to identifiers.
Technological advances will continue to prompt change in how genetic material is used, and protected, in the research context. A recent Associated Press article highlights one emerging use of previously collected genetic information — law enforcement requesting access to it to aid in investigations. The article does not address research, only organizations that use genetic information to research customers’ family lineage. However, think about all those genetic research databases and repositories that exist…somewhere. Could they someday be targeted by law enforcement? What kind of measures should researchers and IRBs take to protect against such potential risks?