OHSU

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 anonymous2 or coded3 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

Documents

OHSU Notice of Your Right to Decline Future Sample Research, Including Anonymous or Coded Genetic Research

Notice provided to OHSU patients.  Also the form used by patients if they wish to opt-out.

 

Opt-Out Communication to Non-OHSU Indirect Providers 

Document that may be used to communicate a patient opt-out to an indirect provider (e.g., a lab).  Note:  opt-outs are automatically printed on printed order requisition forms out of Epic and A2K.

 

Opt-Out communications from Non-OHSU Providers to OHSU 

Form that may be used to communicate a patient opt-out to Health Information Services if your department receives an Opt-out notification directly from a non-OHSU entity (rather than the patient themselves).

Admissions personnel resources

Script for Admissions Personnel