| Genetic testers | Individuals (affected or unaffected) who have already had a genetic test and received a genetic test result. This could be positive (unfavourable) or negative (favourable). Results may have been received prior to or following the introduction of the moratorium |
| Pre-testers | Individuals (affected or unaffected) who are eligible for and are actively considering having a genetic test |
| Decliners | Individuals who are eligible for but have chosen not to have a genetic test |
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