Blog Entry

Privacy and DeCode Genetics Bankruptcy

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 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.

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Contrary to popular belief, body cells in a human may not all have the same DNA

According to an article in Science Daily, 15 July 2009, "research by a group of Montreal scientists calls into question one of the most basic assumptions of human genetics: that when it comes to DNA, every cell in the body is essentially identical to every other cell."
The original report of the results appears in the July issue of the journal Human Mutation.
The article continues:

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."

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Gee, what are GWAS?

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.

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Bills, laws, rules, and regulations--implementing GINA

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. 

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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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Genomics Policy Process: Presentation


We've started posting presentations from a number of our community talks to SlideShare. Our first one is entitled "The Genomics Policy Process: Forming Partnerships Between Citizens, Experts, and Policy Makers," by Drs. Fowler, Allison, and Garland at Translating ELSI: Ethical, Legal and Social Implications of Genomics, Case Western Reserve University, May 3, 2008.

| Genetizen's blog

Amazon users who accessed AAAGTCTGAC also bought...

Just in time for the holidays:

Users who accessed AAAGTCTGAC also bought:

  • BioPet DNA Breed Identification Kit
  • The DNA of Relationships
  • DNA Nation iPhone Cover Sticker
  • DNA by Bijan for Men -- Eau De Toilette

I couldn't resist playing with Amazon's announcement that it's making the Annotated Human Genome Data available via Amazon Web Services.

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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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