To test or not to test. Are you curious? I am. BUT, what are the consequences?
Within the last month, Quest Diagnostics sent me two emails—one promoted “Genetic Insights” based on my DNA. [8/20/2024 TCV Update: URL no longer available on Quest site.] The other? In a moment.
Genetic Insights
I was curious to “identify certain health risks based on [my] DNA and [my] family history.” I could learn whether I am at risk for breast or colon cancer, genetically inherited high cholesterol, or heart disease. I can learn which parts of my DNA might foretell what may come during the next 10 or 20 years.
I may learn of certain health risks that may place greater immediacy to my bucket-list trip to the Galapagos Islands. Or I’ll have faith that my life’s guardian angels, who already work overtime, will ensure I can continue to be of service to others.
We humans love to explore, to venture into the unknown. Space? Deep sea? What about ourselves? How long do we have? How we will die? When? The answers may help us prepare for what’s to come. But do we really want to know?
Will You Get Alzheimer’s?
What stopped me cold was Quest’s second email—a test for Alzheimer’s. [8/20/2024 TCV Update: URL now points to non-Alzheimer’s tests.]
I was surprised by my reaction.
After 25 years, in this field, working with caregivers and people with dementia; why would I on the front lines not want to take advantage of this test?
After all, my father lived with Alzheimer’s as did my mother’s sister. My father’s brother lived with Parkinson’s. I believe had my mother lived longer than age 72, she would have been diagnosed with some form of dementia. Being that forms of dementia are on both sides of our family, there’s a higher risk that my sister, brother, and I may be diagnosed in our lifetime.
So why do I hesitate to take this test?
Hesitate to Take Test for 3 Reasons
I hesitate to take the Alzheimer’s test for three reasons.
- There is no cure.
- Confidentiality will be broken, affecting insurance eligibility, while raising the stigma.
- Do we really know which markers lead to dementia or Alzheimer’s?
Let’s look first at diagnosing Alzheimer’s.
Do we really know which markers lead to dementia or Alzheimer’s?
The apolipoprotein E gene or APOE-4, has been repeatedly shown to be a significant marker for dementia; particularly, Alzheimer’s. Yet, post-mortem brain autopsies show brains riddled with the hallmarks of Alzheimer’s, while the person lived a life symptom-free. There are also familial risk factors for dementia. It’s a 50-50-coin toss. This means that each member of a family has a 50% chance of receiving a diagnosis.
Quest measures the ratio between two plasma concentrations per the paragraph below. Digging deeper I learned more. The more I learn the more questions I have. For example, does the test from Quest (see their paragraph below) identify APOE-4, the gene associated with Alzheimer’s?
“The AD-Detect Test for Alzheimer’s Disease, a blood test for Alzheimer’s disease, measures A-beta 42 and A-beta 40 biomarkers (a biological marker of a molecule found in the body that may be used in evaluating a disease state) in the blood and provides the A-beta 42/40 ratio. The ratio between these two molecular biomarkers may help to detect risk of Alzheimer’s disease in an individual.”
Bottom Line: The challenge is to pinpoint what causes Alzheimer’s or dementia. If researchers knew the cause they could direct their attention toward a cure. Right now, we are only marginally successful in reducing or delaying symptoms. And these come with side-effects.
There is no Cure
While pharmaceutical companies are developing vaccines and treatments to delay the onset of cognitive loss due to dementia, we are currently treating a disease that cannot be cured.
Confidentiality will be broken, affecting insurance eligibility, while raising the stigma.
In my 60+ years, I have observed people break their pledges of privacy, secrecy, and discretion. They’ve signed non-disclosure agreements and go on to share secrets. Even the late Princess’ butler shared details of the royal family after a decade of service. Why not? Others are doing it! Even a prince!
No matter how many HIPAA forms you sign, there will be of leak if the incentive is strong enough. After you’re diagnosed, you’ll have difficulty getting life, disability, and long-term-care insurance.
Finally, as much as awareness and compassion have grown in the quarter century I’ve working in the field of caregiving and dementia, the stigma remains. Even if your friends and family are respectful and value your need for independence, there will always be this annoying concern in their minds. After your diagnosis, when you grab the keys to the convertible and want to take a road trip for a few days, your family and friends will feel uneasy.
For further reading: Alzheimer’s Drug Study – Promise of Hope or a Nightmare?
