The ApoE4 gene variant is associated with a higher risk of developing Alzheimer's disease, which can lead to the need for long-term care and disability services. The 2008 U.S. Genetic Information Nondiscrimination Act (GINA) protects against health insurance and employment-based discrimination.

However, federal and state discrimination laws are not comprehensive and do not fully protect patients in all employment settings. There are gaps in GINA’s protection; specifically, life, disability, and long-term care insurance. GINA does not apply to employers with fewer than 15 employees.^1,2

Five of 7 payers with policy positions on ApoE testing state they do not cover ApoE, and 2 apply generic pre-authorization criteria. Rationales supporting coverage decisions include reference to guidelines or national standards, inadequate data supporting testing, characterizing testing as investigational, or that testing would not alter patients' clinical management.³ Insurance companies typically do not cover direct-to-consumer genetic testing and consumers are not required to share their results with insurance professionals.⁴

The REVEAL and SOKRATES II clinical trial results support the premise that disclosing ApoE results to cognitively unimpaired adults does not cause adverse psychological outcomes.^5,6

References:
1. Joly Y et al. Annu Rev Genomics Hum Genet. 2020;21:491-507.
2. American Medical Association (AMA). Genetic Discrimination. AMA website. (n.d.). https://www.ama-assn.org/delivering-care/precision-medicine/genetic-discrimination
3. Arias JJ et al. Genet Med. 2021; 23:614-620.
4. National Human Genome Research Institute (NHGRI). (2022). Direct-to-Consumer Genetic Testing FAQ. NHGRI website. Updated March 31, 2022. Accessed May 22, 2023. https://www.genome.gov/For-Health-Professionals/Provider-Genomics-Education-Resources/Healthcare-Provider-Direct-to-Consumer-Genetic-Testing-FAQ.
5. Largent EA et al. J Alzheimers Dis. 2021;84:1015-1028.
6. Christensen KD et al. Ann Intern Med. 2016;164:155-163.