Table 2.

Examples of decisions Huntington’s disease gene carriers make.

Genetic testing	Whether or not to have predictive testing When to have predictive testing Whether to share the results of the test with family, friends and the wider world
Reproduction	Whether or not to have children at all Whether to have children who are also at risk of HD Whether to use preimplantation testing or prenatal testing or natural conception
Sharing HD status	When to tell friend or new partners about gene status Do employers need to know? When do the DVLA need to know? Does the GP need to know? When to tell children that HD is in the family
Forward planning	When or if to set up an advanced directive Is it necessary to set up a proxy decision-maker in advance? If so, who will it be?
Care choices	Do you want to have a PEG fitted to assist feeding, if so when should it be removed? When is independent living no longer practical or possible? Should care be provided at home or in a nursing care facility.
Experimental research	Whether to take part in experimental studies