(Ivanhoe Newswire) – 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
