It is expected there will be continued growth in the number of people taking an APOE4 test as more therapies become available to manage aspects of Alzheimer's Disease. Here, Jerry Tan, a postdoctoral researcher at DPUK explains the background to a project aiming to find the best way of supporting people taking an APOE4 test.
The Apolipoprotein E (“APOE”) gene plays an important role in maintaining cardiovascular, brain and immune system health. We each have two copies of the gene – one inherited from each parent – and each copy can be one of three possible variants (APOE2, APOE3, APOE4). Compared to the general population, individuals that have one copy of the APOE4 variant are at much higher risk of developing Alzheimer’s disease as they age. This risk is increased even further if both copies of an individual’s APOE gene consist of the APOE4 variant.
Until recently, genetic testing for the APOE4 variant was discouraged. In the absence of effective preventative treatments for Alzheimer’s disease, knowing that you were at increased risk brought minimal benefit and could lead to increased health anxiety. However, significant breakthroughs in dementia research have been made in the last decade. We now have treatments that clear the abnormal proteins behind Alzheimer’s, and better evidence on how to reduce the risk of developing the disease. An increasing minority of people are now getting tested for the APOE variant, either as part of research studies, to check eligibility for dementia treatments or are doing so out of curiosity using commercial testing kits.
Nonetheless, there is no consensus on how to best explain the results of APOE4 testing to those who choose to get tested for it. This is why we have launched the “APOE for You” survey – so that researchers and clinicians can understand the motivations, concerns and expectations of people who might choose to get tested. This will allow us to develop counselling tools for APOE4 gene testing that are appropriate, clear, respectful and relevant to our local context in the United Kingdom. Anyone with an interest in Alzheimer’s disease or other dementias is welcome to complete this online survey. The survey can be accessed here: https://popped.org.uk/apoe4/ and will take approximately 10-15 minutes to complete. The more responses we get, the better we can tailor future APOE4 counselling tools to the needs of our population.