While knowledge that you carry the ε4 variant of the APOE gene can provide an opportunity to be proactive about your health, there are some important considerations to take into account BEFORE you get tested. We encourage you to start by becoming informed about the basics of APOE-ε4. As carriers of the ε4 genetic variant who have been through the process of having this knowledge revealed to us, sometimes unexpectedly, we urge you to think about the implications of learning your status.

For a research perspective on this issue, we recommend this paper from Dr. Doris Zallen of Virginia Tech. Her project solicited input from ApoE4.Info community members and others, and the paper explores the wide ranging psychological impact of APOE-ε4 knowledge. Many of the quotations in the paper come from our members. Dr. Zallen is also the driving force behind Gene Test Or Not?, an online tool to help you decide whether or not to get tested to learn your genetic risk for late-onset Alzheimer’s disease.

Overlapping only partially with Dr. Zallen’s site, below is our own list of questions to ask yourself before being tested.

General

• If you had a genetic variant that significantly predisposed you to an incurable disease, would you want to know?
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Possible Strategies to Reduce Risk

• What if you had the opportunity to practice lifestyle strategies that might minimize your chances of developing the disease, or might mitigate the disease process; would you want to know then?
• What if the evidence supporting those lifestyle strategies was often confusing and even contradictory – would you still want to know?
• Would getting a positive test cause you to do anything differently in terms of diet and lifestyle practices? Could you adopt those changes without knowing the results of the test?
• There is no effective medication currently available to treat this diseases in question. Does this impact your decision to be tested?
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Financial Effects of a Positive Test

• What if this could compromise your ability to qualify for life insurance or long-term care?
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Effects on Family

• What if you tested positive and this meant your family, including your children, carried this genetic variant as well?
• If you told your children, how would they react knowing they might have the same variant?
• Should you talk to your family and children before you test?
• Will you tell them if you test positive?
• How will they react?
• Do they have support?
• Would they want to know?
• Will your relationships change if you test positive?
• How might this affect a decision to have children? What might your spouse/partner think?
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Emotional Distress

• Are people available to provide emotional support if you become distressed by finding out you carried the genetic variant?
• Should you talk to them about this first before you get tested?
• Are your support persons family members who might also be distressed by the result?
• Are you psychologically prepared for a positive test result?
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Final Questions

• Do you have a plan for the future if you do test positive?
• What are the potential benefits to you and your family and potential harm to you and your family if you do test positive?
• After considering all these factors, do you want to know your APOE status?
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Some of you, like many in our community, may already know without having the benefit of this preparation. We understand that you may be experiencing emotional distress as a result of having learned your status without being prepared. Please consider identifying a genetic counselor in your area to help you deal with the aftermath of this revelation. A genetic counselor can also help prepare you for the results of this gene test.

How To Get Tested

There are several ways to learn about your APOE status. Each has pros and cons that need to be carefully considered before moving forward.

1. You can ask a physician to run the APOE genotyping test. You can learn more about it here. Many cardiologists routinely run this test since APOE-ε4 also predisposes carriers to cardiovascular disease. The Pros: If your physician orders the test, often insurance will pay for it. You will receive the information directly from your physician who will be able to address your concerns. If your physician is knowledgeable about APOE-ε4, s/he may be able to guide you through prevention strategies. The Cons: Unfortunately, the majority of physicians are not informed about this gene. Be aware that there are many, often contradictory approaches to preventing the diseases associated with APOE. Also, once the results of a test are entered into your medical record, it may impact your ability to get life insurance or long-term care insurance. The Genetic Information Nondiscrimination Act (GINA) currently protects US residents from losing healthcare because of genetic information. Be aware of the laws and practices in your country before asking your physician to order this test.‌
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2. You can order a direct-to-consumer test such as that offered by 23andMe. The FDA-approved Health+Ancestry test will tell you whether you carry 0, 1, or 2 APOE-ε4 alleles and provide information about your propensity to develop several other medical conditions. The Pros: Knowing your genetic risk information allows you to take preventative steps. By ordering the test yourself, you can keep this information out of your medical records until/unless you choose to confer with a physician. The Cons: Because you are receiving several potentially distressing genetic test results at one time, the experience can be overwhelming. Unless you’ve taken the time to go through the process of informed consent for each genetic risk, you may not be ideally prepared. Your results may also raise questions. Should you wish to keep the information out of your medical records, it may be hard to access medical help.‌
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If you learn you are a carrier of APOE-ε4, consider joining our community. Peer support in the context of a friendly, moderated community with access to the latest information relevant to our genetic variant can be helpful. We created this nonprofit organization so that you do not have to take this journey alone.