For Immediate Release
Contact: Christopher Cosentino
Director of Marketing & Communications
Phone: (212) 242-1968 x229


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Huntington’s Disease Society of America Releases Updated “Genetic Testing Protocol for Huntington’s Disease”

First Major Revision in Testing Standards Since 2003


New York, NY (April 28, 2016) — The Huntington’s Disease Society of America (HDSA) is pleased to announce the release of the new “Genetic Testing Protocol for Huntington’s Disease.” The Protocol was created to assist genetic counselors and other healthcare professionals involved in genetic testing for Huntington’s disease (HD), as well as to protect the well-being of the person choosing to be tested by ensuring that certain standards of care are adhered to throughout the process.

A primary reason for updating the Protocol was the need to clarify procedures for predictive testing – testing in persons who are not exhibiting symptoms of HD – to determine whether they carry the genetic mutation that causes HD.

The new “Genetic Testing Protocol for Huntington’s disease” is a framework of recommended procedures for those seeking their genetic status for HD.  It provides flexibility for an individual’s needs throughout the process and emphasizes the importance of genetic counseling prior to taking a blood sample for genetic analysis. Counseling allows the individual to consider the ramifications of both a potential positive or negative result while also ensuring that specific information has been discussed, such as the need for life, disability and long-term care insurance.

Additionally, the new Protocol addresses how the results should be disclosed to the individual and emphasizes an in-person experience in order to avoid miscommunication, allow for questions, and provide the opportunity for the individual to schedule a follow-up call or visit.  The document also updates the testing protocols for confirmatory testing, prenatal testing, pre-implantation genetic diagnostic testing, anonymous testing and testing in minors.

“The new “Genetic Testing Protocol for Huntington’s Disease” is a vital tool for HD families who are considering testing, because it clearly outlines what they should expect from healthcare professionals to appropriately support them in this life-altering process,” said Louise Vetter, Chief Executive Officer of the Huntington’s Disease Society of America.  “It’s literally a ‘bill of rights’ for everyone considering testing, and we believe that it will help put behind us the days of abrupt phone-delivered results to individuals who never had the benefit of counseling.”

HDSA’s “Genetic Testing Protocol for Huntington’s Disease” was developed by an expert committee of HD professionals skilled in the areas of genetic counseling, social services, and neurology.  Additionally, HD family members who had already participated in the predictive testing process provided important input throughout the process

To access a copy of HDSA’s “Genetic Testing Protocol for Huntington’s disease”, please go to



Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

 The symptoms of HD are described as having ALS, Parkinson’s & Alzheimer’s – simultaneously.

 The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD.  From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

 To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit or call (800)345-HDSA.