Retention, Inspection, and Disclosure

Retention of genetic information obtained for research is addressed in the statute. Genetic information obtained for anonymous research conducted after notification or with consent may be retained. Genetic information obtained for non-exempt research may be retained with the authorization of the individual research subject. Genetic information obtained for non-exempt research should be destroyed promptly upon the completion of a non-exempt research project or withdrawal of the individual from the project, unless the research subject has directed otherwise by informed consent. An individual may inspect, request correction of and obtain genetic information from his or her records, if that information is coded, identified, or identifiable (ORS 192.537).

The general rule is that disclosure of genetic information is not allowed and cannot be compelled, unless specifically authorized by the tested individual in a consent form prescribed by DHS rules (ORS 192.539(1)(d)). This would suggest that, for research purposes where a repository was being developed or genetic information was going to be stored, an informed consent form approved by an IRB would need to be supplemented with the DHS consent form in order to disclose the genetic information to the repository.