A couple months ago, the American College of Medical Genetics and Genomics (ACMG) recommended that doctors share incidental genetic findings with patients. Robert Green explains:
The recommendations state that laboratories performing a sequencing analysis of the protein-coding regions of DNA (the exome) or of the entire genetic code (the genome) for any medical indication should also examine 57 genes for well-recognized mutations that might signal a risk for one of 24 life-threatening but treatable conditions. While there are literally thousands of genes that could potentially influence a person’s future health, the ACMG felt that discovering mutations for these 24 conditions (such as hereditary cancers or heart conditions that could cause sudden death) was so important that a laboratory sequencing the genome should deliberately search for these mutations, and that these were genetic “panic values” that should always be returned to the ordering physician. The recommendations called for analyzing and returning this information without seeking the patient’s explicit permission for each and every gene to be tested, and regardless of the age of the patient being sequenced.
I predict that, as genomic testing becomes more precise and prognostic, failing to tell a patient about her genetic disease risks will be seen as being just as moral as neglecting to tell her about an aortic aneurysm discovered during an ultrasound examination for gallstones. Keeping people ignorant is rarely the right thing to do.