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
Key Services and People
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 to local Dept. of Clinical Genetics can be made by any health & social care professional, most commonly GP, HD Specialist, HD Clinical Lead, Psychiatry & Specialist Youth Advisors . Some clinical genetics services also accept requests for genetic counselling directly from clients who describe an HD family history.
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.