01/08/2011 11:35 am ET | Updated May 25, 2011

Alzheimer's Disease: Would You Want to Know Your Test Results?

Recently The New York Times has been running a series under the heading "The Vanishing Mind" on the subject of Alzheimer's disease. This intriguing series has given an overview of research efforts underway that are aimed at revealing the origins of this devastating and frightening disease, as well as approaches to its treatment. Of course, as of this writing, no effective treatment has been discovered, although several approaches offer promise.

In its December 18th edition The New York Times ran a piece in this series by Gina Kolata. The issue that Ms. Kolata addressed is one that we all should be concerned with: Who owns the results of medical tests?

Today, as a result of ongoing research, doctors are finding ways to assess our potential to contract Alzheimer's disease. This, in turn, has spurred a debate among doctors regarding at what point patients should be told the results of such tests, or whether -- because there is no cure -- they should be told at all. Today, for example, tests such as MRI's can detect brain shrinkage that may be an early sign of Alzheimer's. Spinal taps can be used to measure the extent to which our bodies are able to pass through a substance called amyloid which, as it builds up in the brain, plays a role in the disease. Finally, genetic tests can be used to detect the presence of a particular gene that is associated with an increase in the likelihood that we will end up with Alzheimer's. While not perfect predictors, taken together these diagnostic technologies can give patients a sense of the likelihood that they will contract Alzheimer's at some point. Significantly, in each of these instances the patient may not yet manifest any overt symptoms of the disease. The question then becomes: At what point is it reasonable for us to seek such tests and the information they provide us? And a corollary to this question is: Do we face any risks if we choose to pursue this information?

The point of the article that stood out most for me was the extent to which it is almost exclusively medical personnel who appear to be engaged in this debate about if (and when) a patient should be given knowledge of test results like the above and their implications. Some doctors argue that since there is no treatment for Alzheimer's, telling a patient that he or she is at higher risk for contracting it is pointless.

My question is this: Am I the only one who finds it objectionable that doctors would presume to make this decision unilaterally? How would you feel if there was a history of Alzheimer's in your family, you requested testing to see how vulnerable you might be, but were then told that you could not see the results? How is this different from letting the doctor decide whether or not to tell you that you have end-stage cancer, based on your prognosis?

So, who owns these tests results, anyway? The answer is not necessarily a simple one. One would think that, as the patient, I have some ownership of medical tests that bear on either my present or future health. However, if I (or you) happen to have these tests done as part of a research project, chances are that we signed something called an "informed consent," which probably included a clause in which we surrendered our right to see the results of the testing. Researchers do this because they are primarily concerned with aggregate data: what they can learn from testing a lot of people and comparing tests across groups (for example, a group of people with a family history of Alzheimer's, as compared to a group of patients with no such history). That approach serves the goal of researcher, but does it serve the interest of the subject?

In The New York Times article, one 66-year-old man who requested genetic testing because his mother and mother's father had both had Alzheimer's said that if he'd tested positive he would likely have taken an early retirement and done some of the traveling he'd always wanted to do. Having "taken a gamble" and testing negative for the bad gene he decided to stay on in his university position for a few more years and travel during the summers. A 62-year-old woman who'd suspected she was experiencing early symptoms, such as having difficulty dealing with numbers and forgetting very recent events, said she was actually grateful to hear her doctor confirm, based on tests he did, that she likely was in the early stages of the disease, so that she could plan ahead for her own gradually increasing need for care. These individuals were fortunate, for their doctors elected to share the results. However, you should know that there is no consensus among doctors or researchers on this issue. That leaves you and me having to approach this matter of testing for risk carefully. Specifically, if you do want to know about your risk for contracting a disease based on medical testing, it is up to you to make this clear -- preferably in writing and up front. It is also important, if you choose to undergo testing as part of a research project, that you read any "informed consent," thoroughly before signing, and ask if it includes giving up your right to know the results of testing.

If there is one reason why people might want to hesitate to either undergo tests or learn their results, that reason has to do with health insurance and whether they could possibly be denied care based on those results. Insurance companies have long been in the practice of asking, on applications for insurance, if you have ever been diagnosed or treated for an array of diseases. In this case, if your test results indicate that you are at increased risk and you disclose that, it has in the past been legal for your insurance company to dump you. Health care reform as it exists right now bans this practice and gives us some protection from finding ourselves out in the cold based on the results of tests such as those described earlier. However, the fate of health care reform remains uncertain, with some politicians vowing to repeal and/or eviscerate it. Let's hope that does not happen, so that our doctors do not have to withhold information about us from us, and so that we can take that information into account in how we choose to run our lives.

Learning to live with a terminal or potentially terminal illness is an experience that is increasingly being shared by millions of Americans. It is part of a process we call "the new grief" that we discuss in detail in our new book, Saying Goodbye: How Families Can Find Renewal through Loss.