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.
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 Oregon Health Authority, the agency in charge of overseeing the implementation of the genetic privacy law. The committee, which meets bi-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.
Participation: Guests are welcome to participate in our discussions, but please note: Depending on the length of discussion and our agenda, the Chair may ask guests to refrain from participation during some periods.
Invitations: If you are a member of the committee and are inviting a special guest to participate or present on a particular topic, please notify the Oregon Genetics Program by calling: 971.673.0273, or emailing: firstname.lastname@example.org. Please also be prepared to introduce your invited guest briefly during introductions.
Voting: This committee is composed of members that, depending on the agenda, may need to vote. If voting occurs, then only members (or their alternates) may vote.
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 guidance for individuals, employers, health care providers, and health insurers on the new federal law.
- H.R.493: Genetic Information Nondiscrimination Act of 2008
- Comparison of The Oregon Genetic Privacy Statutes and GINA
- CRS Report for Congress to GINA
- The Genetic Information Nondiscrimination Act of 2008: Information for Researchers and Health Care Professionals, Department of Health and Human Services, April 6, 2009
- Guidance on the Genetic Information Nondiscrimination Act: Implications for Investigators and Institutional Review Boards, Department of Health and Human Service, April 6, 2009
Each biennium, the Advisory Committee on Genetic Privacy and Research is required to develop a report for the legislature on its activities and recommendations.
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.