Genetic Testing, Privacy, and Liability - Would You Rather Not Know?

CHICAGO, Illinois (AP) -- Advances in genetic testing are straining the sacred bond of confidentiality between doctor and patient as physicians grapple with whether to keep private diagnoses that might also afflict patients' relatives.

Failure to warn family members about genetic risks has already resulted in several lawsuits, including a Minnesota case involving two children born with inherited mental retardation.

Another scenario involves women diagnosed with inherited breast cancer, whose female relatives might unknowingly carry the same defective gene and might want to start early mammograms or even have their breasts removed -- as some women with the gene defect have chosen.

Genetic testing is becoming increasingly more common. Prenatal testing is routinely done, and risk assesment when dealing with inherited disease. Some folks opt for testing just to know as much as possible about themselves. However, all this testing and discovery can open some doors that people may not want opened.

Would you want to know if your relative had a cancer gene? Do you think the doctor of a relative should be obligated to tell you about such a risk or condition? Should they be liable if they DON'T tell you, or decline to release information about the testing of a relative that could have an impact on your health?

I feel this should be a private matter between one individual and their doctor, and if the patient decides to share the information, then that is their decision. Patients may not always do the right thing, but the loss of privacy if genetic testing results could be released to relatives, employers, or insurers is too much to give up without specific consent.

I'm not sure I'd even want to know. The power or suggestion can be so powerful, and could expecting to get breast cancer lead me to greater risk? Think of the guy recently who was told mistakenly he had AIDS, and lived the life for 8 years and looked close to death, and like the picture of AIDS itself. There is something refreshing about living your life the best you can, and taking what comes. If you have relatives with cancer, you can probably guess you are at a higher risk and don't need genetic testing to prove it to yourself.

The full text of the article quoted above can be found at: www.cnn.com...

Good points. I don't think doctors should be required to tell any relatives about genetic predispositions to disease to the relatives of patients. The predisposition could be different in the relative, or non-existant. How does the doctor know what someone has just from his relative? How does the doc know that Johnny's brother Stu is really Johnny's full brother and not half brother? Lots of things like that go unknown for years.

If the relatives themselves want to discover genetic predispositions they should check it out themselves. I hear in about 10 years there will be self-analysis kits at pharmacies kind of like self-pregnancy tests.