In Reversal, Genetics Group Says Patients Should Be Allowed to Refuse 'Incidental' Findings
By Jennifer Couzin-Frankel,
Science
| 04. 01. 2014
Apparently bowing to pressure from its members, the American College of Medical Genetics and Genomics (ACMG) says that patients should be allowed to “opt out” of learning about how their DNA might increase their risk of disease. The policy,
announced today, reverses a
controversial recommendation that the group made last year. It urged clinicians to tell people undergoing genomic sequencing whether their genes might make them more likely to develop serious disease in the future, even if they didn’t want that information.
The original ACMG policy aimed to offer much-needed guidance in the area of so-called incidental findings, which are increasingly presenting a conundrum in medicine and research. As the cost of gene sequencing drops, DNA being sequenced for one purpose may yield many other secrets, such as the risk of certain cancers and Alzheimer’s disease. Almost exactly a year ago, ACMG
proposed a radical shift in how incidental findings are handled. Not only did it say that findings should be shared with patients—it also argued that labs should actively look for certain DNA mutations in someone whose...
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