What is the NSGC Practice Guidelines Committee?
The NSGC Practice Guidelines Committee (PGC) was established in 2012 to facilitate and standardize development of documents to guide and inform clinical practice of genetic counselors. PGC members are NSGC volunteers representing multiple specialty areas. The PGC identifies subject areas that would benefit from NSGC documents to inform practice, assembles author groups, and then works in collaboration with these authors to develop documents to inform genetic counseling clinical care and ultimately set standards for our practice. As we near the PGC’s 10th anniversary, the current committee leadership would like to take this opportunity to share published NSGC practice documents, give an update on documents being written now, explain the process for initiating Clinical Practice Guidelines and Practice Resources, and invite genetic counselors to get involved.
NSGC Document Types
The NSGC Practice Guidelines Committee develops two types of primary documents – Clinical Practice Guidelines and Practice Resources. Both document categories have the primary goal of supporting genetic counselors and other healthcare professionals in making clinical decisions and delivering consistent, high-quality care. Both also demonstrate the integral role of genetic counseling in delivering high-quality care to patients with genetic diagnosis or those seeking genome-guided medical care. Nonetheless, there are some key differences.
Clinical Practice Guidelines
Clinical Practice Guidelines are documents “that include recommendations intended to optimize patient care that are informed by a systematic review of evidence and an assessment of the benefits and harms of alternative care options.”(REF) These rigorous, evidence-based documents are created through a multistep, 3-year, 2-author group process with the goal of definitively answering focused (Patient, Intervention, Comparison, Outcome, Time (PICOT)-format) clinical practice questions.
Practice Resources are evidence-informed documents whose primary goals include information sharing and developing genetic counseling best-practices. They are written by a single author group and ideally completed in a 1-year timeframe. While practice resources are informed by the available evidence and literature, they do not require a systematic evidence review. Practice Resources are particularly well-suited to broader discussions of genetic counseling for a specific disease or subspecialty, to emerging technologies, and to establishing genetic counseling practice norms (for instance for clinical documentation or pedigree nomenclature).
Endorsements of Practice Documents of Other Specialties
NSGC encourages collaborations with other professional organizations developing clinical practice documents that will impact care of patients and families with genetic conditions or the utilization of genetic technologies and services (https://www.nsgc.org/Policy-Research-and-Publications/Endorsements). Representation not only by individual expert genetic counselors but also by NSGC on these documents facilitates recognition of genetic counselors as critical members of the healthcare team. Additionally, endorsements help establish consensus and support for recommended clinical practice and positions on specific topics or policies. Therefore, we encourage genetic counselors who are aware of or participating in development of clinical guidelines or resources for other professional or patient organizations to reach out to the PGC to consider whether collaboration or endorsement would be mutually beneficial. Examples of recent PGC endorsements can be viewed here.
Current and Developing Documents
Currently available active Clinical Practice Guidelines, Practice Resources, and Endorsed documents can be viewed online by all NSGC members. NSGC recently updated our Clinical Practice Guideline development policies so a number of older guidelines that no longer meet standards for an evidence-based document have been retired, but are still available for review. Clinical Practice Guidelines are actively being developed for five topic areas: expanded carrier testing, epilepsy genetic counseling and testing, hypertrophic cardiomyopathy genetic testing and counseling, telegenetics, and hereditary cancer counseling. Practice resources for the following topics are currently under development: clinical documentation, congenital heart disease, dystrophinopathies, human pedigree nomenclature (revision), Lynch syndrome, polygenic risk scores and elective genomic testing.
Opportunities for Member Involvement
Suggest a Document
The PGC welcomes suggestions from the membership for new Clinical Practice Guidelines and Practice Resources Should your proposal be accepted the PGC will put out a broad call for authors to ensure all aspects of relevant expertise and diverse opinions are represented among the authors.
Answer a Call for Authors
NSGC seeks to assemble diverse author groups representing multiple perspectives and incorporating expertise in all disciplines relevant to the document. Multi-specialty and multidisciplinary expertise ensures NSGC documents are produced with the highest scientific quality. Genetic counselors from the wider community and patient/community representatives are also selected as authors to ensure the document will meet the needs of all stakeholders. Please consider applying to join one of our author groups.
Join the Committee
Each year the PGC welcomes 5-7 new members to the committee for a 3-year term. PGC members select topics for new Clinical Practice Guidelines and Resources, assemble author groups, and support authors in developing these documents and guiding them through the development, review, publication, and endorsement process. PGC members can also serve on, or lead, PGC subcommittees (e.g. COI Subcommittee) or working groups (e.g. Document-Endorsement Outreach). We are looking for genetic counselors across clinical specialties and representing diverse employment settings (industry, academia, education, etc.) Experience in research, systematic evidence review, grading evidence and recommendations, and professional guideline development are particularly valuable skills for prospective committee members.
Please consider applying to join this active, hardworking committee devoted to creating high quality practice documents for our profession this September when the general NSGC Call for Volunteers goes out.