March 9, 2009

Should Docs Be Able to Share Genetic Information?

If doctors are aware of genetic information about a patient that could put his relatives at significant risk as well, should they be able to inform those people of the risk even if the original patient wants to keep the results private?

That was the question posed in a new report, and the answer is all over the map. While some health experts believe rules on sharing information about genetic tests, such as those for breast cancer, should be eased, other argue the practice would further erode personal privacy already threatened by computerized medical records.

Questions also abound about who to share the information with and when it should be shared. For example, should a teenage girl learn about her aunt's positive test for a breast cancer gene, or would it be better for her to hear about this when she gets older? Or, should genetic information regarding a disease be shared with relatives even if there is no way to prevent the disease from occurring?

The authors of the report note direct-to-consumer genetic tests are complicating the issue further because those tests cut health care professionals out of the picture entirely, leading to a greater likelihood results will be misunderstood or misused.

"We welcome this debate . . . because there are circumstances where lives could be saved by more timely medical interventions," journal editor David Collingridge was quoted as saying. "However . . . some genetic tests that claim to predict cancer do not generate results that justify radical treatments or even intensive screening, so subsequent disclosure of such information to third parties is not justified because lives are not demonstrably at risk. Equally, any changes in the law need to be considered carefully to prevent inappropriate use of confidential, personal information."

SOURCE: Lancet Oncology, published online February 28, 2009


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