The ACMG Secondary Findings Working Group needs your input!

Nominations now open for additions or deletions to ACMG panel


Background: The ACMG recently published a policy statement on clinical sequencing emphasizing the importance of seeking out and disclosing selected medically actionable results (secondary findings) even if they are unrelated to the initial reason for exome or genome sequencing  (Green et al. (2013) Genet Med 15(7):565-574).

 

We are listening to you!
The ACMG established the Secondary Findings Working Group which has developed a process to review and update the current list of 56 genes based on feedback from a formal membership survey (Scheuner et al. (2015) Genet Med 17(1):27-35).  Our mission is to create a dynamic and up to date ACMG-approved list of actionable genes to be used by laboratories performing DNA analysis and clinicians returning genomic results.

Starting at the ACMG 2015 Annual Conference, ACMG members are invited to nominate genes for addition to or deletion from on the ACMG Secondary Findings panel:
  • Only ACMG members will be able to nominate genes for the first 6 months as procedures are established and tested. 
  • We will subsequently open this up to other professional organizations.
How can you nominate a gene? 
You can nominate a gene to be added or removed from the list by submitting supporting evidence through our convenient nomination form. Download the nomination form, provide the requested information and email to acmg@acmg.net

As you submit a nomination, please keep in mind the goals of the Secondary Findings Gene Panel: 
  • Genes should be medically actionable. “Actionability” means that a medical or surgical intervention is available that has demonstrated effectiveness to alter the course of the disease process itself. 
  • Genes should have a clear phenotype associated with deleterious mutations. The phenotype(s) and penetrance will need to be described and at least one of the phenotypes should have serious medical implications. 
What’s Next?
The Secondary Findings Working Group will review nominations periodically with a plan to publish updates to the Secondary Findings Gene List twice per year.

We are always open to feedback on this process and sincerely thank you for helping with this exciting project!


Working Group Co-Chairs
Christa Lese Martin
David T. Miller 

Working Group Members
Sherri Bale
Wendy Chung
Christine Eng
Jim Evans 
Gail Herman
Sarah Kalia Teri Klein
Bruce Korf
Kent McKelvey
Sue Richards
Christopher Vlangos
Mike Watson

Patient Advocate Member
Kathy Adelman