Table 1 Key areas to cover in predictive test counselling.

From: Genetic testing for monogenic forms of motor neuron disease/amyotrophic lateral sclerosis in unaffected family members

Pre-Test

Test

Result

Post Test

Information about the condition including inheritance and penetrance

Testing options

Predictive test protocol

Expectations and motivation to test

Support system/family communication

Rehearsal of possible test outcomes and impacts

Potential for insurance discrimination

Timing of test

Communication of result (e.g., who they plan to share result with)

Research opportunities

Consent

Plans for result session and follow up

Test outcome & meaning of result for individual and family members (including residual uncertainty)

Review of penetrance

Plan for follow up

Summarise points in a letter or electronic communication

Contact usually within 6–8 weeks of result

Assess coping

Discuss family communication

Options to participate in research