Table 2.

Genetic counseling and disclosure session talking points for participants undergoing first time disclosure of their APOE results

API Genetic Counseling and Disclosure Process: genetic counseling and disclosure session talking points with individuals receiving first-time∗ disclosure 1.Introduction to session 2.Review purpose of session and confirm the individual's interest in participation 3.Review family history, with focus on AD/dementia 4.Basic clinical description of AD, MCI, and dementia 5. Impact of APOE on AD risk a. Cannot definitively predict or rule out development of AD b. No medical management currently available based on APOE status c. Review three possible results and associated AD/MCI risk i. Zero copies (ε3/ε3, ε2/3, ε2/ε2) ii. One copy (ε3/ε4, ε2/ε4) iii. Two copies (ε4/ε4) 6.Inheritance of APOE gene; address possible implications for children and siblings 7 Considerations for learning APOE results a. Psychological impact b. Familial impact c. Clinical research impact 8.Review Genetic Information Nondiscrimination Act (pertains to United States only) 9.Address specific concerns or considerations about learning APOE result 10. State option to either proceed with disclosure of APOE genetic testing results, postpone disclosure to later date, or decline disclosure of APOE results a. If proceeding with disclosure, talking points 11–16 would follow b. If postponing, review plan for participant to recontact site when ready to proceed with disclosure. Address remaining questions and concerns before ending the session c. If declining disclosure, participant would be given time to address their questions or concerns before ending the session 11. Disclosure of APOE result a. If participant receives genotype containing rare ε3 (ε3r) variant, provide education and risk assessment for corresponding ε3 genotype and address information in the “Rare APOE ε3r gene variant” slide in the standardized APOE risk handout 12. Disclosure of AD risk information a. Provide comparison for other APOE genotypes to provide context 13.Allow participant to ask questions and/or discuss issues of concern or interest that are of most importance to them after learning result 14.Address participant's emotional response to result (if any) 15.Review plan for follow-up phone calls by study coordinator 16.State eligibility for next steps in research participation

Abbreviations: APOE, apolipoprotein E; API, Alzheimer's Prevention Initiative; AD, Alzheimer's disease; MCI, mild cognitive impairment.

^∗Talking points for participants already aware of their APOE status is available in the supplemental online information.