Genetic Privacy

Five years ago, I was recruited--reluctantly--to write a regular blog for geneforum. I began my connections with the non-profit group when I edited an article by Greg Fowler, a geneforum founder, written for Oregon's Future, an opinion magazine that has now changed its name but can still be found by googling the name.

My associations with geneforum, and its members, have been very interesting and led me to renew my interests in genetics and the public interpretations of information presented in national and web media. I've been posting blog entries primarily on genetic testing and stem cells, but picked up other interesting leads when they presented themselves. Sometimes, I spent all day reading and researching articles before posting my own blog. 

The following story describes the first known case testing GINA, the Genetic Information Non-discrimination Act:

Will Washington Enforce the Genetic Non-Discrimination Act? (http://www.inthesetimes.com/working/entry/6065/will_washington_enforce_the_genetic_non-discrimination_act/)
Monday, June 7, 1:21 by Lewis Maltby

First-ever case tests 2008 law banning employers from discriminating based on workers' genetic profiles

Pamela Find didn't want to make history; she just didn't want to die of cancer. But when her employer fired her because she carried a gene linked to breast cancer, Fink became the first American worker to file an official federal complaint under the Genetic Information Non-Discrimination Act (GINA), which Congress passed in 2008.

Wow--this is fantastic! For only $20 to $30, you can purchase--at Walgreens later this month--a saliva sampling kit (a couple of cotton swabs, aplastic container, label, postage-paid envelope, instructions). Great, now what?

For an additional fee of $79 to $249, you can actually have the DNA tested. 

In part because on-line offers of genetic testing kits have not gleaned much business, Pathway Genomics--a new company--will test the drug store market, hoping to make their money that way. 

Are you interested? Consider that the company is linked with Walgreens, so the data collected can be used to market treatments and drugs for the diseases supposedly being tested for. I say "supposedly" because we now know that nearly all disease tests touted in these direct-to-consumer products are actually determined by many factors, both genetic and environmental. The "answers" you get may or may not affect your future health--but will likely affect your emotional and psychological health, and will definitely affect your pocketbook. 

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.

As a citizen of the United States, you are entitled to comment on actions being considered by your government. The issues of genetic privacy and genetic discrimination reached the forefront again this week as the Equal Employment Opportunity Commission (EEOC) released the text of a proposed rule for implementing the Genetic Information Non-discrimination Act (GINA).

Many people think that, because GINA was signed into law, they are now protected from insurance and job discrimination on the basis of their genetic information--not true. the "devil is in the details" applies here as in many other situations. 

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.

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.

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.