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Debating the Incidental

On The Takeaway this week, host Todd Zwillich bridged two brief arguments on somewhat opposing sides of the debate over the new American College of Medical Genetics and Genomics recommendations on disclosing incidental findings from genome sequencing.

In a segment on Monday, Arthur Caplan head of the Division of Medical Ethics at the NYU Langone Medical Center told Zwillich that the new report — recommending that all labs performing genome sequencing should notify physicians about their patients' status for a set of 24 conditions, genes, and variants and that doctors who receive this information must share it with their patients — could potentially scare patients away from genomic testing.

Caplan worries especially about the provision that doctors should tell patients, whether they want to know or not, about their genetic risk status for these 24 conditions.

"When you take a test, someone has to ask you if you want to know the results, particularly if those results are not what you came for," he said.

In a rebuttal Tuesday, Robert Green, a medical geneticist at Brigham and Women's Hospital and an author of the new recommendations said the working group spent 14 months "agonizing over" questions on what information should be reported to physicians and what should not, coming up with an "extremely short list of genes and conditions," that allow for the possibility of treatment or amelioration in some way.

Green argued that genetic information is just another tool for identifying and exploring patient's risk of disease, and should be treated the same way as other tools in the medical testing repertoire.

"This is nothing new," he said. An x-ray technician who sees a shadow in a patient's lung is required to put that in a report to the physician, who is ethically bound to investigate it with his patient.

"[The recommendations are] a way for us to bring genomic information in line with the way we treat the rest of medical care information," Green said.