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Nasty Surprises From Research Projects - Should Patients Be Told?

By Hank Campbell in Science 2.0
October 5, 2011
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Submitted by Hank on Wed, 10/05/2011 - 06:49
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As more people sign up for research projects and have their genomes sequenced, an ethical issue will become more prevalent; whether to tell them about mutations that might affect them or their families.

The law says an independent lab has to confirm any results, or the paper is published, and that makes sense but concern arises about exceptional circumstances - at Nature, Erika Check Hayden writes about researchers who discovered a pregnant mother was carrying a genetic mutation linked to Ogden syndrome, that had caused cardiac death in babies in the person's family before their first birthday.

The baby was born and died the same week the paper on the causative mutation was published. 

Genome sequencing is now starting to be used in the clinic to guide diagnosis and treatment decisions but there are some tough policy questions that have to be asked and answered as it becomes more prevalent.

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