Friday, January 13, 2012

Best Post of July 2011: Formal Guidelines for Alzheimer's Genetic Testing Issued

The next in our "Best of the Month" series is from July 19, 2011:

Dr. Edward B. Lee
In recent posts, I discussed the availability of direct-to-consumer ApoE testing and the fact that I myself submitted buccal cells to 23andMe.com to discover my own ApoE status. The illustrious Eddie Lee, MD, PhD just emailed me news that the American College of Medical Genetics and the National Society of Genetic Counselors have recently issued formal guidelines regarding ApoE testing in patients. Reported and discussed on the Alzheimer Research Forum, the guidelines, published in the June issue of Genetics in Medicine, identify which individuals may benefit from genetic testing.

1 comment:

Anonymous said...

On December 17, 2011 it was reported in The News and Observer that UNC researchers won a $6.4 million dollar grant "to help transform the long-promising technology for studying human genes into practical methods for helping patients." The article goes on to say: "other goals of the project include exploring tricky issues such as how to deal with detailed information the sequencing reveals about a patient's genes that is unrelated to their illness"

Bravo,right?

I suppose they were lucky that someone like me was not in charge of where NIH money for genetic research goes.

On December 7, 2011 just 10 days before news of that triumphant federal score, The News and Observer ran an article with much smaller print: Eugenics payments considered. Victim calls $50,000 'a joke'. Apparently the EUGENICS program in NC sterilized 7600 people between 1929 and 1974. Forced sterilization for people who were mentally ill, "feeble minded", poor, or thought to be promiscuous. I imagine Chapel Hill and the City of Medicine trained and educated some of the many people involved in this NC scandal over the 5 decades it was up and running.

Genetic Information and Guidelines. Who should be setting the bar? What U.S. medical institution demonstrates the ability to fairly and responsibly address the moral and ethical dilemmas that increased genetic information will yield in an era of markedly dwindling financial resources? This is a country whose healthcare system is on the brink of collapse under the weight of an aging population and rapidly advancing poverty that further separates the haves from the have nots. The healthcare programs that a state sponsors says a great deal about the think tanks that trained their work force. This state has also come under repeated fire for their current treatment of the mentally ill in real time.