Genetic Privacy Statement

NOTICE of your right to decline participation in future anonymous or coded genetic research

The State of Oregon has laws to protect the genetic privacy of individuals. These laws give you the right to decline to have your health information or biological samples used for research. A biological sample may include a blood sample, urine sample, or other materials collected from your body. You can decide whether to allow your health information or biological samples to be available for genetic research. Your decision will not affect the care you receive from your healthcare provider or your health insurance coverage.

Research is important because it gives us valuable information on how to improve health, such as ways to prevent or improve treatment for heart disease, diabetes, and cancer. Under Oregon law, a special team reviews all genetic research before it begins. This team makes sure that the benefits of the research are greater than any risks to participants.

In anonymous research, personal information that could be used to identify you, like your name or medical record number, cannot be linked to your health information or biological sample. In coded research, personal information that could be used to identify you is kept separate from your health information or biological sample, so it would be very difficult for someone to link your personal information to your health information or biological sample. Your identity is protected in both types of research.

If you want to allow your health information and biological sample to be available for anonymous or coded genetic research, you don’t have to do anything. If you make this choice, your health information or biological sample may be used for anonymous or coded genetic research without further notice to you.

If you want to decline to have your health information and biological sample available for anonymous or coded genetic research, you must tell your healthcare provider by:

  • Completing a Notification and Opt-out Statement & Form and giving it to your healthcare provider or
  • Completing a Notification and Opt-Out Statement Form and mailing it to the address provided below.
Your decision is effective on the date your healthcare provider receives the Notification and Opt-out Statement & Form.

No matter what you decide now, you can always change your mind later. If you change your mind, tell your healthcare provider your decision in writing by sending a letter, include mailing address. If you do change your mind, the new decision will apply only to health information or biological samples collected after your healthcare provider receives written notice of your new decision. If you have questions about the Notification and Opt-out Statement & Form contact the Privacy Officer at 541- 228-3056, or write us at the address below.

Cascade Health Solutions
Attention: Privacy Officer
2650 Suzanne Way, Suite 200
Eugene, OR 97408

Where can I get more information?

Contact the Oregon Genetics Program at 971-673-0271, or visit  www.healthoregon.org/genetics