Genetic Privacy and Research - Information and Documents

Oregon Genetic Privacy Laws

Since 1995, Oregon has had a law to protect the privacy of personal genetic information and prevent misuse of genetic information in clinical, research, employment, and insurance settings. While a number of states currently have such a law, Oregon was one of the first. The law is continually being evaluated to assure that it meets the goals of assuring privacy, preventing misuse of genetic information, and keeping the legal environment amenable for genetic research and genetic health services in the state.

• History of Oregon's Genetic Privacy Law (pdf)
  
  

• Oregon Genetic Privacy Laws and Statutes (pdf)  
  

  
  

• Genetic Privacy & Research-Fact Sheet for Health Care Consumers
  
  

• 2005 Legislative Changes in Oregon's Genetic Privacy Law-Fact Sheet for Health Care Providers - Opt out Provision for Genetics Research

Advisory Committee on Genetic Privacy and Research (ACGPR)

In 2001, the Oregon Legislature established the Advisory Committee on Genetic Privacy and Research (ACGPR) to provide ongoing review and guidance on genetic privacy and research issues for the legislature and the Department of Human Services, the agency in charge of overseeing the implementation of the genetic privacy law. The committee, which meets monthly, is made up of researchers, biotechnology and pharmaceutical representatives, public health representatives, health care providers, insurance regulators, civil liberties and privacy advocates, consumers, educators, and ethicists.

• Authorizing Statute (pdf)
  
  

• ACGPR Member Roster (pdf)
  
  

• ACGPR Meeting Minutes

Federal Genetics Privacy Legislation

In June 2008, the first federal genetic privacy law - the "Genetic Information Nondiscrimination Act" GINA - was signed.  The federal law may require changes in Oregon's Genetic Privacy Law, which will be assessed prior to the 2009 Legislative Session.

• "What Does GINA Mean: A Guide to the Genetics Information Nondiscrimination Act"

  This document, written by the Coalition for Genetic Fairness (http://www.geneticfairness.org/), provides guidances for individuals, employers, health care providers, and health insurers on the new federal law.

   

   

• H.R.493: Genetic Information Nondiscrimination Act of 2008 (pdf)
  
  
• Comparison of The Oregon Genetic Privacy Statutes and GINA (pdf)

Legislative Reports

Each biennium, the Advisory Committee on Genetic Privacy and Research is required to develop a report for the legislature on its activities and recommendations.

• 2007 ACGPR Legislative Report (pdf) (181 KB)
  
  
• 2005 ACGPR Legislative Report (pdf)  (308 KB)
  
  
• 2003 ACGPR Legislative Report (pdf) (1.2 MB)
  
  
• 2001 Genetic Research Advisory Committee (GRAC) Report (pdf) (106 KB)

Institutional Review Board (IRB) Resources

The 2001 law required the Oregon Department of Human Services to develop a registry of all institutional review boards that review genetic research in Oregon. The purpose of this registry is to allow for sharing of information and education related to the genetic privacy law and rules. IRBs that are registered with the federal Office for the Protection of Human Research Subjects will be registered automatically.

• IRB Registration Form (pdf) (15 KB)
  
  

• Presentation from the IRB Forum in August of 2003 (pdf) (1 MB)

  
  

• Factsheet for IRBs & Researchers (pdf)