Genetic tests and clinical utility

There was a story on NPR's Talk of the Nation earlier this week (listen here) about the array of genetic tests that are now available to you, the consumer. The news hook was a new blood test that researchers claim can define individuals' likelihood to develop Alzheimer disease. Like many other such tests, this one doesn't yield a yes/no answer: it identifies an increased propensity to develop the condition. It can't say for sure whether a person will in fact get Alzheimer disease, or, if she does, what the course of the illness is likely to be. But, for many people, the trouble is not just the certainty of the diagnosis or the accuracy of the prediction.

For some conditions, like Alzheimer's and Huntington's, treatment is limited and cures have not yet been found ... so there isn't anything that a person might do differently to reduce the risk of getting sick. The clinical utility of testing in these situations is limited: the results of the test will not change the medical management of the patient. Some people want such information to help them plan for their own futures and those of their families; others don't want to know and might see such unwanted information as burdensome.

Lots of questions here. Would you want to know? What is the value of information in this situation, and are all reasons for testing equally deserving of respect? Should such tests be available in direct-to-consumer form, without medical direction or involvement--and does it matter if the reason people pursue testing "off the books" is to prevent their insurance company from finding out that they're at increased risk? Should counseling be mandatory, or is that too much paternalism?

News from the Nanoworld

From the UK Telegraph, cool news from the world of nano: The protein linked with Alzheimer's disease has inspired the design of "nanoyarns" that could be put to a vast range of uses, from body armour to parachutes and super strong nets.

Full story here.

In Sickness, and in Health...Sanctioned Cheating?

When does it become "acceptable" to look the other way or turn the other cheek when a spouse looks outside the marriage for companionship? Perhaps when the spouse faces his or her "darkest night"...

Ethical considerations can become complex when dealing with patients in long-term care situations, and not all spouses would be as loving--or understanding.

Love In the Time of Dementia.

Stem Cells May Reverse Alzheimers' symptoms

From the UK's Daily Mail in London, November 7 : Scientists at the University of California in Irvine have for the first time used stem cells to reverse memory problems associated with strokes, Alzheimer's, and degenerative brain disease in mice. The researchers say that the cells repaired damaged parts of the brain and restored lost memory. They believe that their technique may also work on humans. Full article here.

Good news, but I am curious as to why the scientists used newborns' neuronal stem cells as opposed to embryonic or adult stem cells?

Emotionally Abandoned Alzheimer’s Patients

I think Alzheimer’s disease is becoming a bigger concern for most people in this country. As the years go by, there seems to be more media on the disease, as well as more awareness about its deteriorating effects. This New York Times article investigates the window of opportunity to enjoy life before Alzheimer’s makes daily life too difficult to enjoy, and how many people are emotionally abandoned by their families as their condition deteriorates.
Should people with early stage Alzheimer’s be treated differently than “regular” people? They still have feelings, but in many cases, Alzheimer’s patients are saying that their spouses do not talk to them like they did before their diagnosis, and it makes their fate that much more difficult. Typically, patients have 2-5 years left to enjoy before Alzheimer’s really takes over their lives. Some people may experience short term memory loss, but can have lengthy conversations. Other people may not be able to form sentences easily, but retain their memory. In any case, shouldn’t we try to treat these people as if they didn’t have a medical problem?
There are groups in place that create volunteer opportunities for Alzheimer’s patients. According to this article, and other studies, it is important to give people a sense of responsibility, as long as they can handle it (mentally and physically). Some patients are guest speakers at different venues, but leave the stage and can’t remember what they spoke about.
I can’t think of anything more frustrating than a family member, let alone a spouse, getting annoyed because I’m suffering from a disease that cannot be controlled. I think it’s best to enjoy everyday activities with loved ones while you still can, and hopefully they’ll remain by your side, but what if they don’t? Feeling emotionally abandoned when you know you won’t remember your family, your name, your address, or how to speak must be awful, and if I am ever diagnosed with Alzheimer’s, I would want all the support I could get.

Full article: http://www.nytimes.com/2007/03/29/health/29alzheimers.html?pagewanted=2&_r=1&ref=health