Genetic Testing

Learn about genetic testing--in your own language

Here's an example of ways in which the UK is doing things you don't hear much about in the US:

EuroGentest extends genetic patients information leaflet series by popular demand.

Professionals and patient groups across Europe welcome continuation of pioneering work by EU-funded project.

Following the major success of its initial 11 patient information leaflets on key topics in genetic disease and genetic testing, EuroGentest, an EU-funded Network of Excellence, has embarked upon a new series. Professionals and patient groups across Europe have identified the need for guidance and information on specific topics such as predictive testing, carrier testing as well as a generic “What Happens in the Genetics Laboratory” guide.

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Privacy of Kids' Genetic Testing Site for Athletic Ability

News sites and genetic blogs have been abuzz over the past few days with the ATLAS Sports Genetics' release of a genetic test to determine kids' athletic ability. ATLAS isn't the first to offer the test, but the company's site trumpets:

Finding any great Olympic champion normally takes years to determine.
What if we knew a part of the answer when we were born?

There are a number of ethical questions raised by that statement and the implications of these tests, which many others have been writing about (e.g., here and here). However, I'd like to raise some concerns about the company's use of genetic information, its privacy policy, and marketing practices.

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Will spit parties replace Botox parties?

It all starts with a simple invitation from a friend: "You are invited to join the group Slow Caffeine Metabolizers", date, time, location. You are more likely to receive an invitation if you're one of those who has money and feels as comfortable in evening dress as in jeans and teeshirt. And, if you're "IN".

They call them "spit parties" and the plan is that--sometime in the evening--you will spit into a cotton-filled tube, donating enough of your DNA for a commercial operation to analyze it for single nucleotidepolymorphisms (SNPs). Meanwhile, you are building the sponsoring company's database.

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Genetic testing on sale--Why??

Let's see if I can tell you what's happening without naming the company involved. . . .

Today, one of the companies offering genetic testing dropped its $999 price for a "full genome scan" to $399. Most of the stories I read were taken directly from the Associated Press release and quoted the company's CEO as saying, "The mission of the company has always been to enable anyone to be able to get access to their genetic information."

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Genetics for Dummies

Some time ago, my daughters suggested I write a "dummies" book about Genetics. I really don't like the series, but decided to think about it.

A few days ago, I did just that--think about it, that is--by checking out a link from some page that referred to genetics education sites. I found that there is already a Genetics for Dummies book, published in 2005, and written by a geneticist from the Northwest. 

Scooped again. But that leave more time for other things. 

If you're interested in reading this book, and other books on many, many topics, you can download free online versions. The site's bookmarked on my other machine, so I'll have to add it to this post in an edit. I had to register for and download an access program first, but could then download and read the book I wanted.

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Welcome to the geneforum blog!

Wow, have I been out of touch lately! A few weeks ago, when I returned to Oregon after selling my home in Utah, I logged in and promised to start posting blogs again.

Didn't make it. So, let's try again.

My personal news is that the Godfrey genetic pool has been increased by one beautiful baby boy, born to first-time parents. He doesn't look like any family member in particular, but does have a couple of features we suspect are genetically determined.

Now that I have access more often to a computer, I will be trying to post more regularly.

Here are some subjects I'm finding of personal interest at the moment. Let me know how these fit with your interests.

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Selecting "healthy" embryos by preimplantation genetic diagnosis

I almost missed Good Morning America's piece about the couple who selected which embryos to implant so they could  "guarantee" that their child would not have breast cancer. So many, many misconceptions arise from this event, as well as challenges to individual personal values. Let me talk a bit about the misconceptions, since I'm not intending to challenge anyone's deeply held values. 

First, a great kudo for Robin, who carefully chose each word she spoke about the event and its implications.  Her introduction was clear and accurate, with just the right amount of interest and no hype. 

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Nutritional supplementation and genetics

My thanks today to Tammy Antzler, who supplied me with three references to information on research and progress in personalized nutrition. 

The first reference is a 75-page report from the Department of Health and Human Services on Personalized Health Care (PHC). The report details agencies of the government that are involved in the many different aspects of PHC. There are a few, very brief, references to diet, environnment, and genetics. These are generally genome studies--populations, not individuals.

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Will back door regulation work on genetic testing companies?

At least one of the companies cited in the States vs. genetic testing issue is fighting back. Their argument? DNA is data not blood.

As far as I'm concerned, their challenge is fantastic!

Advocates of genetic privacy and regulation of genetic testing have been urging the Federal government to get involved for some time and both the FDA and CMS (which handles Medicaid and Medicare) have said that it's too early to worry about regulations or oversight. So, New York and California have taken up the gauntlet and challenged companies offering genetic testing services "illegally" in their states.

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