What is genetic research? Can you give me an example?
Genetic research is the study of whether there are genetic reasons for certain diseases and health conditions, such as obesity, Alzheimer’s disease and some cancers.
What does “anonymous and coded research” mean?
Anonymous genetic research may use your health information or biological samples, such as blood or urine, but does not identify you as the source of them. In coded genetic research, your identity is kept separate from your health information and samples. This makes it very difficult for anyone to link them.
Why would genetic researchers want my medical information or biological samples?
Genetic researchers use health information and samples from many patients to better understand certain diseases and conditions. Their research may provide valuable information on how to prevent diseases and improve treatments. Their work may help doctors and patients make better health care decisions.
Will researchers have access to my Social Security number, address and telephone number?
No. None of this personal information is ever released in either anonymous or coded research.
Don’t researchers have to obtain my consent in order to use my information for research?
Researchers must obtain your consent if you are identified as the source of health information or biological samples. In anonymous and coded research, your identity is protected. Still, the new law lets you decide whether to “opt out” of having your information and samples used for this type of research.
Does Providence do genetic research?
Providence does only a limited amount of genetic research. We may receive requests from other providers who are conducting anonymous or coded genetic research.
Will my genetic information be shared with my employer or the government?
No, it will not.
Can I think about this and make my decision later?
Yes. If you decide to allow your health information and specimens to be available for anonymous and coded genetic research, you don’t need to do anything. If you decide not to allow this, you can complete the Genetic Privacy Opt-Out Form given to you, and return it to your provider’s office or to the hospital where you were treated.
What if I change my mind?
If you change your mind later, you will need to inform your health care provider. Your decision will affect only health information and specimens obtained from that date forward.
Can I opt out of anonymous but not coded research, or vice versa?
No. If you opt out, your decision applies to both anonymous and coded research.
Where can I find out more about genetic research and my rights to privacy?
The Oregon Department of Health and Human Services has a special Web site on genetic research: http://egov.oregon.gov/DHS/ph/genetics/research.shtml. You can call the Providence Integrity Line at 1-888-294-8455 for more information. Additionally, you may call 503-574-9816 or 503-574-9123.
