By Allison Proffitt
April 1, 2014 | Incidental findings and their treatment dominated the conversation at many sessions of the Annual Clinical Genetics Meeting
last week in Nashville, and today, the American College of Medical Genetics and
Genomics Board of Directors announced new recommendations for the return of
incidental findings. The Board still considers incidental findings to be
important medical information, but recommends an “opt-out” option be offered to
patients before testing.
Previously, the official ACMG recommendations allowed
patients to opt out of receiving genomic information and incidental findings
about 56 genes recommended for sequencing. The new recommendation suggest that
patients be given the choice to opt out before testing takes place, so that
results that they would wish not to receive are not generated.
The new recommendation was made a year after the initial
ACMG recommendations were announced in March 2013. The Board referred to
“direct feedback, participation by Board members in numerous forums exploring
these issues, informal conversations, published articles, commentaries and,
most recently, an extensive member survey” in making their decision, said a
“This update to our recommendations moves the opt-out
discussion to the point where the sample is sent rather than at the time when
results are received by the ordering clinician, as was originally recommended,” explained Gail Herman, president of the ACMG, in a press release.
Incidental findings can be of great value to families, the
Board maintained. Explanation to patients of the opt-out option and its
implications should be part of the general education and informed consent
process undertaken by the ordering clinician prior to ordering the test.