Kate Bonini, MS, MA, CGC; Elise Sobotka, MS, MPH, CGC ; Holly Mueller MS, CGC; Ashley Svenson, MS, CGC
As a leading voice among genetics professionals, the National Society of Genetic Counselors (NSGC) is committed to advancing professional excellence and engaging in public dialogue on issues relevant to human genetics, the genetic counseling profession, and healthcare. One way that NSGC does this is by contributing its unique perspectives through the release of important documents, including: public statements, public comments, position statements, practice resources, and practice guidelines.
It can be confusing to understand the relevance of all these documents and how they are created. Here, we clarify the purpose of each NSGC public document, explain their similarities and differences, and summarize how they are created. In addition, we highlight the ways that NSGC members can suggest and contribute to these documents.
Briefly, in alignment with NSGC’s Strategic Plan, these documents publicly state NSGC’s positions on and opinions regarding best practices for topics related to genetic counseling. While the genetic counseling profession will experience the largest and most direct impacts as a result of these documents, these documents also have the potential to broaden awareness of genetic counseling and to define a standard of care that integrates genetic counselors in the broader healthcare team. The table below defines each document type and summarizes the development processes, timelines, and involved parties.
The initiation process can vary by document type, with guidance and oversight from NSGC’s Board of Directors. They are crafted in partnership with other NSGC Leadership (such as Committee leaders), the Public Statement Committee (PSC), the Practice Guidelines Committee (PGC), other NSGC groups that may have subject matter expertise, and staff partners. All published documents are reviewed and approved by NSGC’s Board of Directors prior to release and/or publication.
NSGC acknowledges that policies and recommendations for best practices can change over time. The PSC and the PGC are charged with regularly reviewing and updating previous documents to ensure they remain aligned with current knowledge, evidence, practice, technology, and NSGC’s strategic goals.
Importantly, NSGC members can be involved in the development of these documents in several ways:
- Members can propose topics for position statements, practice resources or practice guidelines at any time via forms on the PSC and PGC webpages. Suggestions can be signed or anonymous, and are reviewed by the appropriate receiving committee.
- Members can apply to be an author for a practice resource or practice guideline through the PGC’s call for authors, or can serve as a subject matter expert in the creation or revision of a position statement. Requests for membership involvement for both the PGC and PSC occur through NSGC member communications, which allows members to identify themselves as a content expert and volunteer to participate.
- Members can review and comment on position statements, practice resources, and practice guidelines. These undergo a 2-week member comment period, during which members have the opportunity to provide direct feedback. Subscribed NSGC members receive notification of these comment periods via NSGC member communications, with the ability to provide signed or anonymous feedback for the relevant committees to review.
Additional information can be found on both the PSC and PGC websites, listed below. All members should make sure that they are subscribed to the NSGC General Discussion forum to receive notifications about these documents and ways to provide feedback. To become more directly involved in the above processes, NSGC members can look for calls for authors or announcement of member comment periods or apply to be members of the PPC, the PGC (during the Call for Volunteers every fall), or Board of Directors (during the Nominations every winter).
If you have any additional questions about these documents and related NSGC processes, please contact the NSGC general inbox (nsgc@nsgc.org).
Resources/Additional Information:
NSGC Public Comments
NSGC Position Statements
Position Statement Committee website
Practice Guideline Committee website
Key:
SER: Systematic Evidence Review
IOM: Institute of Medicine
PSC: Position Statement Committee
PGC: Practice Guidelines Committee
JoGC: Journal of Genetic Counseling
Kate Bonini, MS, MA, CGC is the current Chair of NSGC’s Position Statement Committee. She is a research genetic counselor at the Icahn School of Medicine at Mount Sinai in New York.
Elise Sobotka, MS, MPH, CGC is the current Vice Chair of NSGC’s Position Statement Committee. She is a cancer genetic counselor at the City of Hope National Medical Center in Duarte, CA.
Holly Mueller MS, CGC is the current Chair of NSGC's Practice Guidelines Committee. She is a prenatal genetic counselor at the University of California, San Francisco.
Ashley Svenson, MS, CGC is the Vice-Chair of NSGC’s Practice Guidelines Committee. She is a medical policy director at Myriad Genetics.