Talk

Not sure how I missed this, but in May the popular diabetes magazine Diabetes Health ran a short article announcing the test. They included a nice quote from my boss, Ryan:

“The deCODE test can provide new insight for those concerned about the possibility of developing type 2 diabetes. The results of this genetic test, along with the support provided by our team of genetic counselors, can help people understand their risk of developing this disease and provide them with valuable information to help prevent the onset of disease.”

The online version of the article even includes a link to the DNA Direct website. Genetic counseling got mentioned (it usually ends up on the editor’s floor, even though it’s an important aspect of genetic risk testing). Nice PR!

Technorati Tags: diabetes, decode, decode T2, risk, dna direct

Over at Eye on DNA, Hsien just interviewed someone who took deCODE’s T2 test for diabetes risk to see what it was all about.

This week, I interviewed cardiac nurse Kendra James of Diabetes Notes and A Hearty Life about her experience with the deCODE T2 genetic test and although she had already been diagnosed with type 2 diabetes, it was still an interesting experience for her.

Hsien asked whether Kendra would consider having her daughters tested for this or any other genes. As the mother of a three-year-old, this made me think. When talking about genetic risk information, it’s important to consider a child’s right to privacy, or you might call it, a child’s right to not know. Young children aren’t in a position to make educated, informed decisions about things like the impact of genetic risk information. As parents, we are their proxies until they reach the age of 18. So unless genetic information were to affect their immediate health, I think that choice lies with them, not us.

I am absolutely interested in genetic risk information for myself — I agree with Kendra’s “knowledge is power” sentiment. With risk information, you can make choices about prevention (and perhaps, stick to them with greater determination). But, in terms of children’s health, as a parent you can make lifestyle and other choices based on family history alone, i.e., “Mom has a genetic risk and it has such-and-so inheritance pattern — which means you’ve got the risk of a risk. When you’re older, you can choose whether to learn if you carry the risk or not.”

Parents out there, what do you think? Ethical watchdogs? Genetic counselors — I know you’re steeped in this — give us your two cents.

Technorati Tags: decode t2, type 2 diabetes, risk, dna, genes, genetics, testing, personal story, considerations for children

A new review of the deCODE T2 test for diabetes risk is in — from someone who is a blogger and a nurse, and has type 2 diabetes. Kendra James over at Diabetes Notes talks about both the test and her experience testing through my company. So, I was a bit nervous when a friend emailed me the post.

The good news (for me, as content director):

DNA direct sent me a little email hello to let me know my results were ready, and I just clicked the mouse, logged in and yee-ha, there they were. DNA direct explains the test results in depth and provides many resources to better understand them. They even offer a letter that can be printed out and taken to your doctor. How cool.

They also have a whole team of geneticists and specialists that can provide support and guidance for each individual “tester”. There is a plethra of websites and phone numbers that are also offered to all those that choose to complete deCode’s T2 risk marker test.

The debate (which Hsien and others have echoed):

And that brings me to the only real negative in the whole testing process. Because the deCode T2 Risk factor test is a choice and not a necessary, the cost is $500. You really could argue either way. “Isn’t $500 worth knowing your future and how to prevent diabetes?” The other… “Why pay $500 to find out that you might be at risk. Just eat right and exercise, and that’s all you can do!”

Kendra asks: Would you be interested in taking the test? I’m curious too, so go over to Diabetes Notes and weigh in!

I’m a big fan of Nicholas Wade’s journalism. He’s got a wonderful way of making complicated science easy to understand, explaining both details of a scientific discovery and what they mean in the larger scheme of things. So today, I recommend everyone check out ” Gene Identified as Risk Factor for Heart Ills” to understand the latest fruits of genome mapping and the HapMap. Although focused on a particular genetic discovery for cardiac risk, he captures in a nutshell why we’re in the midst of a “genomic revolution.”

(See the substantial news coverage on the cardiac risk gene discovery - pick your favorite source and see what they say about it.)

Personally, I’m intrigued that this early gene discovery is getting such play, when the actual release of a diagnostic test for a similar risk factor (type 2 diabetes risk) did not receive the same attention (although it’s mentioned in some of this cardiac coverage, since deCODE is involved in both discoveries). Are we as news consumers only interested in the promise and hope of early discovery? Are we jaded when it comes to practical applications? Or, are we unwilling to swallow the medicine of behavioral change, looking instead for a magic pill? Perhaps the threat of a heart attack is somehow, qualitatively different than diabetes, because it’s potentially immediately deadly rather than deadly over time. Are the hazards of diabetes easier to ignore?

Technorati Tags: genes, heart disease, risk factors, myocardial infarction, heart attack, decode genetics, decode diagnostics, nicholas wade, type 2 diabetes