Deciding whether to have the genetic test

Examples of Support

Finding out about and telling others about HD

Living with genetic risk and testing

Getting information when required (e.g. on family life with HD, emotional wellbeing & coping skills, condition information and access to services)

Advice to help decide whether genetic testing is right for you

Predictive testing

Diagnostic testing

Integrated Multi Agency Arrangements, Referral Pathways and Resources

Clients without symptoms but with a family history of HD, and who wish to consider predictive testing should be referred to the local genetics service. All referrals Clinical Genetics can be made by any health & social care professional, most commonly GPsHD SpecialistHD Clinical Lead, Psychiatry, Specialist Youth Advisors and neurology . Clinical genetics will also accept requests for genetic counselling directly from clients from a known HD Family.

Clients with symptoms suggestive of HD, and a known family history of HD, should be offered referral to Clinical Genetics .

Clients with symptoms which could be due to HD, but with no known family history of HD, can be offered a diagnostic genetic test directly by neurology clinics. Prior to testing clients must be informed that they are being tested for a hereditary condition, and that there might be implications for them and their relatives if they test positive. If HD is confirmed, such clients should be referred to Clinical Genetics who will liaise with the HD Service.

GP information services, such as SCI Gateway and/or GGC Referral Directory, should clearly identify HD Clinical Leads

It must not be assumed that clients with a family history of HD choosing not to take the test, or receiving a negative result, require no further support. Access to further support and advice – such as that provided by HD Specialist, Specialist Youth Advisor, psychology

/ neuropsychology and talking therapy services – should be offered.


The International Protocol for Testing should be followed unless a clinical decision has been made to follow a local alternative.

All appointments should meet the treatment time guarantee and referral standards of individual services used.

Whoever is designated as lead professional should take responsibility for coordinating the support each client requires throughout their testing journey.


People living with the genetic risk of HD and their families have easy access to accurate and understandable information, receive emotional and practical support and feel supported through all testing choices and outcomes.

National Care Framework for Huntington's Disease