Genetic Testing

I'm naive, I admit, but I still have the right to expect some privacy in this American life--if not for me, perhaps for my children. So, I've always wondered what would happen when a genetic testing company folded. DeCode genetics--collector of many, many genetic profiles of Icelanders--is doing just that. Here's a comment from privacy.com. I've left in the hyperlinks for your use.

DNA Testing Firm Goes Bankrupt; Who Gets the Data?: Via Threat Level.

An Icelandic firm that offers private DNA testing to customers has filed for bankruptcy in the U.S., raising privacy concerns about the fate of customer DNA samples and records, according to the Times of London.

This discovery may undercut the rationale behind numerous large-scale genetic studies conducted over the last 15 years, studies which were supposed to isolate the causes of scores of human diseases.

Most body samples used in large-scale genomic studies are saliva or blood. If these samples have DNA that doesn't match genetically to cells in the diseased or affected tissue--which this report suggests is likely--then, the samples may not tell us "the truth" about the DNA makeup responsible for the disease being investigated. Thus, "ambitious and expensive genome-wide association studies may prove to have been essentially flawed from the outset."

Perhaps you've been reading in the news lately about genes "for" autism, obesity, cancer, sudden heart attack . . . . . . and on and on.

What are all these reports about? 

Most of the reports you see are based on genome-wide association studies, or GWAS. You pronounce this acronym: gee wahs.

The genome, by the way, is the full set of DNA (the inherited material) in a human, mouse, yeast, or whatever is being studied. In most interpretations, genomics--the science of genomes--includes the study of environmental as well as genetic information. However, GWAS are usually studies of the DNA of large populations of people with disease X compared with 1) people who don't obviously have the disease or with 2) some sort of DNA standard.

The January 2009 issue of the New Scientist features two special investigatory articles on genetic privacy.

"Who's Testing your DNA?" Stealthy paternity and infidelity testing can destroy privacy and tear families apart, but the law is struggling to keep up – New Scientist investigates.

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.

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.

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.

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."

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.

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.