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 or HD Specialist Service depending on client choice. All referrals to local Dept. of Clinical Genetics can be made by any health & social care professional, most commonly GPs, HD Specialist, HD Clinical Lead, Psychiatry & Specialist Youth Advisors . Clinical genetics may also accept requests for genetic counselling directly from clients from an HD family that is known to them.
Clients with symptoms suggestive of HD, and a known family history of HD, should be offered referral to the local HD multi-disciplinary team.
Clients with symptoms which could be due to HD, but with no known family history of HD, can be offered a 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 the HD multidisciplinary team. These teams will liaise as appropriate with a range of specialist services, including HD Specialists and Specialist Youth Advisers.
In all scenarios the client’s capacity, ability to consent to testing and their understanding of the potential implications for their wider family must be fully considered.
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, Neuropsychology ( 01236 712 564 ) and talking therapy services – should be offered.
SCI Gateway should clearly identify HD Specialists as main point of contact for information and advice about HD.
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.