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Genetic Research Notice, Opt-Out Regulations and Guidelines

 

 

The 2005 Oregon Legislative Assembly passed a new law that eases requirements for researchers related to coded genetic research.  As a condition of these eased consent requirements, providers are asked to perform a new role and take on new burdens. Beginning July 1, 2006, health care providers, other than “indirect providers” are required to provide a notice to patients explaining the possible use of their biological specimen or clinical information for coded genetic research now or at some point in the future.  Patients must have an opportunity to formally opt out of such use.  These Guidelines are intended to explain the law related to notification of patients and their opportunity to opt out and to suggest steps hospitals should take to comply.  The Guidelines do not offer suggestions or guidance to genetic researchers.

 

 

Resources

Guidelines for Compliance - Revised June 9, 2006
Administrative Rules and Opt-Out Regulations
Model Patient Notification Letter
Admissions Personnel Script
Consumer Fact Sheet
Provider Fact Sheet

 


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