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...
Related Articles
By Charles Schmidt, Undark | 09.25.2026
In 2010, scientists at the University of Tokyo and other institutions reported a startling achievement: They had successfully grown a pancreas made almost entirely of rat cells within the bodies of mice. The research was directed by Hiromitsu Nakauchi, a...
By Rob Stein, NPR [cites CGS' Katie Hasson] | 09.29.2026
Cathy Tie slips on a white lab coat bearing her name and the logo of her startup: Origin Genomics. "Welcome!" she says as she leads an NPR reporter, photographer and videographer on an exclusive tour of Origin's labs located...
By Emily Baumgaertner Nunn, The New York Times | 09.08.2026
It is one of biology’s most ingenious rhythms: Every baby is born young. No matter how much wear and tear their parents’ DNA accumulated over their lifetimes, reproduction erases the molecular scars, handing a clean slate to the next generation...
What We Inherit by Sam Trejo and Daphne O. Martschenko; and Original Sin by Kathryn Paige Harden have a great deal in common, with substantial differences in style and emphasis. Both books attempt, in different ways, to show the reader just where current research into human genomics stands, where that might be going, and why the authors are interested. In short, the influence of genomic research on our societies is already large and seems likely to change them in ways...