Genetic Privacy

Genetic Privacy Laws

The State of Oregon has laws to protect the genetic privacy of individuals. These laws give patients the right to refuse to have their health information or biological samples used for research. A biological sample may include a blood sample, urine sample, or other materials collected from the body.

Changes in the Law and the Impact on Health Care Providers

What's Changed?

  1.  Beginning July 1, 2006, health care providers must notify their patients that any specimens or health information collected will be available for anonymous or coded2 genetic research unless the person “opts out.”
  2. A patient “opts out” by completing an opt-out form in writing and submitting it to their health care provider.
  3.  The revision changes the types of research that can be done without informed consent using an individual’s (a) biological specimen, or (b) health information.

 

More Information

Impact on OHSU ancillaries (indirect providers)

What's Changed?
  1. The revision changes the types of research that can be done without informed consent using an individual’s (a) biological specimen, or (b) health information.
  2. Beginning July 1, 2006, health care providers must notify their patients that any specimens or health information collected will be available for anonymous or coded genetic research unless the person “opts out.”
  3. A patient “opts out” by completing an opt-out form in writing and submitting it to their health care provider.
  4. If a patient opts-out of coded or anonymous genetic research a health care provider must inform any indirect provider (e.g., lab or radiologist) he/she sends the patient’s specimens or health information to of such opt-out.

 

More information