The Generative Brain
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National Society of Genetic Counselors

The National Society of Genetic Counselors (NSGC) is the US based professional society for genetic counsellors, with its executive office in Chicago. It is not a prion organisation. It matters to the atlas for one practical reason: it runs the public Find a Genetic Counselor directory, which lists more than 3,300 counsellors in the US and Canada, with separate in person and telehealth routes. For the rest of the world it points to a list of national societies, not to individual counsellors. No NSGC practice guideline, practice resource or position statement opened here is about prion disease, or about predictive testing for neurodegenerative disease in adults as a topic of its own. The nearest items are a 2011 Alzheimer document, a position statement on minors and adult onset conditions, and a telehealth guideline.

Key facts

  • NSGC was incorporated in New York on 1 October 1979, after 227 genetic counsellors each gave $10 in 1978 to fund a committee to form it; its stated purpose covers advocacy for genetic counsellors, advancing the practice, and collaboration, education and research for equitable access to genomic care.
  • The Find a Genetic Counselor directory says it gives access to over 3,300 genetic counsellors in the US and Canada. It has a telehealth route for counsellors who see patients by phone, video or other virtual means and an in person route that can be limited by location.
  • The directory describes itself as a list of NSGC members and not a referral service, makes no warranty about the skills of those listed, and tells users to check coverage with their insurer. No date is shown on the page.
  • Outside the directory, NSGC keeps an International Genetic Counseling Organization Directory of professional societies worldwide. It lists only groups that chose to be included, so it may be incomplete, and it was updated in May 2026.
  • The NSGC evidence based telehealth practice guideline, published online on 30 August 2022, conditionally recommends genetic counselling by telephone or video as a delivery method, and says it may reduce barriers to access. It is not disease specific.
  • In the 2023 Professional Status Survey, with more than 3,000 respondents, 82 percent of genetic counsellors giving direct patient care reported using audiovisual telehealth. The page reports the US workforce only and gives no neurology share.
  • The NSGC list of practice guidelines and resources has no title on prion disease, Huntington disease or predictive testing; Alzheimer Disease is the only dementia title, dated June 2011 and reclassified as a practice resource in 2018.
  • The 2011 joint American College of Medical Genetics and NSGC Alzheimer document treats the Huntington disease protocol as a gold standard for adult onset conditions (team approach, pretest counselling in two parts, post test disclosure, a support person). Its text does not address prion disease, and the last part of the page was not read.
  • The NSGC position statement on minors, revised on 16 October 2025, generally discourages predictive testing of asymptomatic minors for adult onset conditions, allows that some circumstances may be appropriate, and strongly recommends counselling before and after a test.
  • None of the 23 current position statements listed is titled for prion disease, neurodegeneration or telehealth. Related titles include Prenatal Testing for Adult-Onset Conditions and Use of Genetic Information in Insurance and Employment Decisions.
  • NSGC supports federal law to designate board certified genetic counsellors as practitioners under the Centers for Medicare and Medicaid Services, and notes they are not recognised by all payers.
  • The Neurogenetics Special Interest Group names dementia and hereditary movement disorders among its example conditions, and does not name prion disease, CJD or Huntington disease.
  • NSGC has an International Special Interest Group for members with an interest in genetic counselling worldwide, including US based counsellors serving patients abroad.
  • Two international membership categories exist for people living outside the US and Canada who trained outside accredited programs. Members get benefits and committee service but no vote or office, and dues run from $60 to $150 a year by World Bank income group.

Timeline

  1. 1978Genetic counsellors fund a committee to form a national society.
  2. 1979NSGC incorporated in New York.
  3. 1993Paper on research into familial CJD that led to presymptomatic testing published in the Journal of Genetic Counseling; only the title and citation were available.
  4. 2011Position statement on access to genetic counsellors adopted.
  5. 2011Joint Alzheimer genetic counselling and testing guideline published.
  6. 2017Position statement on minors and adult onset conditions adopted, replacing the 2012 version.
  7. 2018Alzheimer document reclassified as a practice resource.
  8. 2022Telehealth practice guideline published online.
  9. 2022A prion disease talk on patient and pharma partnership listed at the 41st NSGC Annual Conference in Nashville (newsletter source).
  10. 2023Key findings of the 2023 Professional Status Survey posted.
  11. 2025Position statement on minors revised.
  12. 2026International organisation directory updated.
Sources for this page