The Gift of Knowledge - Prevention Starts with Knowing the Odds

Prevention Starts with Knowing the Odds. That's the opinion of 27 year old Canadian grad student who is especially concerned about Breast Cancer and she has her reasons. She decided to learn how to use the GAIL model to calculate her risk.

deCODEme customer Anna Peterson on top of Acropolis on a camping trip in Athens.

By: Anna Peterson
I am a fit, healthy, 27 year old Canadian graduate student looking forward to the future. So why, you might wonder, did I decide to take the deCODEme genetic test? It’s simple really. Information is the key to prevention. By learning about my genetic predisposition for different illnesses, I will be better prepared to take an active role in my future health care decisions.
Many of my friends were surprised that I decided to take this comprehensive genetic test. Some were curious about the story my genes would tell, while others wondered whether or not I really wanted to know. When I put my genetic sample in the mail, I felt a little nervous about the chain of events I had set in motion, but curiosity overcame fear. In my opinion, knowledge is power and I’d rather make lifestyle changes in my 20s than in my 60s.

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New genetic variants influencing Body Mass Index, Weight, and risk of Obesity

deCODE scientists have discovered new genetic variants influencing BMI, weight and risk of obesity

deCODE scientists have discovered new genetic variants influencing BMI, weight and risk of obesity

As we all know to well, for decades the scales have been tipping in favor of obesity. The epidemic of obesity in many industrialized countries has been driven by many factors, including easy access to fast food, an increasingly sedentary lifestyle, insufficient daily physical activity. All of this while our genomes have evolved on a background of scarcity, often putting a premium on the ability of the body to turn food into fat and store energy for leaner times. A paper published today by deCODE scientists and academic colleagues from the US and Europe provide a significant advance in our knowledge of the underlying genetics and biology of obesity, providing new information for understanding and addressing obesity and perhaps nudging the scales the other way.
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deCODE to Integrate New Genetic Risk Factor for Type 2 Diabetes into its deCODEme™ Personal Genome Scan Service

Prince Joachim of Denmark and Princess Marie of Denmark along with deCODE scientist Unnur Thorsteinsdottir during an official visit to deCODE laboratories earlier this year

Crown Prince Frederik of Denmark and Crown Princess Marie of Denmark along with deCODE scientist Unnur Thorsteinsdottir during an official visit to deCODE laboratories earlier this year.

Reykjavik, ICELAND, December 8, 2008 – deCODE genetics (Nasdaq:DCGN) today announced the discovery by an international consortium of scientists from deCODE and major European and US academic institutions of a single letter variation in the human genome (SNP) that is associated with increased fasting glucose levels and risk of type 2 diabetes (T2D). deCODE will employ its CLIA-registered genotyping laboratory and existing testing platform to swiftly integrate the finding into its deCODEme™ personal genome scan, and to assess the addition of this new variant to the company’s deCODE T2™ reference laboratory test for assessing individual risk of type 2 diabetes.
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Genetic test as a Christmas present

Pam Bale is going to get her three grown-up children a deCODEme genetic test for Christmas

Pam Bale is going to get her three grown-up children a deCODEme genetic test for Christmas

Pam Bale knows what she wants to get her three children for Christmas. Two of Pam’s children are in their 20s and the other is 30. In other words, a little too old for video games. So they’re not getting a Wii or Guitar Hero. Instead, Pam wants to surprise her kids on December 25th with a genetic test.

“I think the kit would open up all sorts of doors to their future,” says Pam. “They are young adults, and at their ages the test can show them what medical concerns they might face down the road. They are young enough so they can take the steps to avoid those concerns. It would make their whole future happier and healthier and extend their lives. I think it’s a great gift to give to my kids. So don’t tell them. I don’t want to ruin the surprise.”

For the whole interview with Pam Bale go to deCODEme Customer Stories.

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Pam sees DNA test as a gift

genetic test customer Pamela Ayers and her grand-children, Spokane, WA

Genetic test customer Pamela Ayers and her grand-children, Spokane, WA

After watching her parents and brother suffer with diseases that might have been prevented with the right care, Pam Ayers has become vehemently proactive. She now believes that genetic health scans are the way of the future and early testing could help parents change their own and their children’s life-style for the better. This proud grandmother is taking care of her family.

Read the whole interview with Pamela Ayers in the Customer Stories section of deCODEme.

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Time magazine’s Best Inventions of 2008: The Retail DNA Test

Time magazine's Best Inventions of 2008: The Retail DNA Test

Time magazine's Best Inventions of 2008: The Retail DNA Test

deCODE staffers were buzzing about Time magazine’s announcement this week of its best invention of 2008: the retail DNA test. As the creators of deCODEme, the first personal genome scan on the market, deCODE staff members were not about to quibble about the date (deCODEme was actually launched on November 16, 2007).

Indeed, the value of deCODE’s capabilities and service is perhaps best demonstrated by the launch of web portals offering similar services based largely upon deCODE’s discoveries, and Time’s article underscored the potential of this new field by devoting considerable attention to the high-powered tech luminaries who have come chasing deCODEme’s tail.

But what sets deCODE apart from the pack is not that it was the first personal genome analysis service to hit the market, but that it grew out of the biggest and to date most successful effort to discover the genetic factors that increase individual risk of public health challenges like from heart attack and breast cancer. More than a dozen years of large-scale research in human genetics, with the experience of having analyzed the genomes of hundreds of thousands of people, really does count.

The competition clearly feels the weight of deCODE’s advantage, which Time highlighted last year when it named CEO Kari Stefansson to the Time 100 list for the company’s pioneering work in genetics. As Time quotes the founder of a deCODEme competitor: “We could make great discoveries if we just had more information.” Perhaps, but fortunately with deCODEme the public doesn’t have to wait for the dot-commers to bone up on their genetics.

Congratulations again to the deCODEme team!

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deCODEme customer support has your answers

deCODE Customer Rep Larus Jon Gudmundsson and Genetic Councelor Kristleifur Kristinsson

deCODE customer rep Larus Jon Gudmundsson and genetic counselor Kris Kristjansson MD

Tapping the vast resources of deCODEme scientists

The users of deCODEme show great interest in their results and are not afraid to ask questions. deCODEme customer support welcomes all questions and inquiries and taps the vast knowledge base and resources of its research teams to respond to all emails as comprehensively and quickly as possible. Among the more general questions we receive is the following.

Question
“I’m seriously thinking about doing the DNA test. Now I only have to decide from which company. How does your test compare with tests from other companies?”
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The battle against breast cancer gets personalized

deCODE Breast Cancer enables women to understand whether they may benefit from more intensive screening, monitoring or preventive drug therapy.

A new genetic test assessing a woman's risk of developing the most common forms of breast cancer has arrived. Can the test, developed by the biopharmaceutical company deCODE, improve the way doctors screen for breast cancer?

Breast cancer kills 40,000 people a year in the U.S. This is about the population of Atlantic City, New Jersey. Imagine, each year an entire city wiped out by breast cancer.

To help fight breast cancer, a new test assessing individual risk has just become available. For women without a clear family history of the disease, the deCODE BreastCancerTM test assesses their personal risk of developing the most common forms of breast cancer. The DNA test, launched by the biopharmaceutical company deCODE, makes it possible to identify those women at significantly higher than average risk, helping doctors use new screening technologies and treatments in a more targeted, personalized and effective manner.

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Heart attack and stroke prevention: measuring lifetime risk

Amy Doneen, Director of the Heart Attack & Stroke Prevention Center, Spokane, WA.

Amy Doneen, Director of the Heart Attack & Stroke Prevention Center, Spokane, WA.

Amy Doneen at the Heart Attack and Stroke Prevention Clinic in Spokane, Washington, talks about an “exciting new time” for preventive health care. Amy, a nurse practitioner, has been using nutrigenomics (the response of genes to nutrition) as part of the program for more than a decade and with outstanding results. “The goal,” says Amy “is to find out what path a patient is on to developing certain diseases and kick them off that path.” Scanning for risk factor for common conditions (such as diabetes, heart attack, several types of cancer etc.) She emphasizes the importance of gauging lifetime risk as against clinical tests that usually concentrate on immediate high risk. According to Amy, some people walk away from the second kind with a negative result and think things are always going to be fine. Genetic testing is just arriving to the market place, but Americans currently spending nearly $50 billion on stroke care alone, the time is ripe to back all advances in preventive medicine.

To read more and watch parts of the interview with Amy Doneen visit the deCODEme Customer Stories.

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The Breast Cancer Network of Strength celebrates 30 years of invaluable support

Breast Cancer Network of Strength was started by Mimi Kaplan and Ann Marcou

Breast Cancer Network of Strength was started by Mimi Kaplan and Ann Marcou.

Attitudes towards breast cancer have changed quite a lot over the past three decades, a fact evidenced by the outpouring of response when stars such as Olivia Newton-John, Kylie Minogue, and, most recently, Christina Applegate, went public with their personal struggles with the disease. But this change in attitude is also reflected in many other ways and not least in the adoption of a new name for the patient advocacy and support organization that until now called itself Y-ME? Tomorrow, a gala event held at the Fairmont Hotel in Chicago will celebrate Breast Cancer Awareness Month and the evolution of Y-ME, 30 years on, into the Breast Cancer Network of Strength-a change they hope that will better communicate the organization’s mission to promote a proactive, engaged and positive approach to fighting breast cancer.

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Genetic test will narrow in on predicting baldness

deCODEme genetic test includes an identification of the male pattern baldness trait.

deCODEme genetic test includes an identification of the male pattern baldness trait.

A team of scientists, led by Professor Tim Spector of King’s College, London, have been taking a closer look at the genetic coordinates for male pattern baldness or androgenic alopecia. Male pattern baldness is the most common form of hair loss in men and one that increases steadily with age. While it has been known for some time that men inherit a tendency for baldness via their x chromosomes from their maternal grandfather, this new research has identified a region on chromosome 20 (20p11) that suggests that a susceptibility for baldness is also inherited directly from one’s father. Read More »

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Breast cancer gene tests explained

On October 8th MSNBC published an article by Arthur Caplan, Ph.D. on genetic tests for breast cancer.
The following is a response by Jeff Gulcher, M.D., Ph.D, Chief Scientific Officer at deCODE Genetics.

Arthur Caplan stresses caution in the application of the new genetic risk tests for common diseases and I certainly agree that genetic testing should be applied with care. However, he goes too far when he says that the new deCODE BreastCancer genetic risk test is only useful for women who have two or more close relatives with breast cancer, is not based on large enough studies to be accurate, and is not regulated.

There are two major types of breast cancer: the rare, early onset form that occurs in certain families and for the detection (for which the Myriad Genetic test is well suited), and the common form which accounts for 95 percent of breast cancer. The vast majority of women who develop breast cancer do not have the conventional risk factors of family history, pregnancy history or breast density. Unfortunately, many of these women were likely considered to be of average risk before their cancer was found. Therefore, they were not even offered screening with breast MRI which detects two to three times more cancer at an earlier stage than mammography alone, or preventive measures such as tamoxifen treatment which can cut down cancer rates by 40 to 50%.
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deCODE launches deCODE BreastCancer™, a genetic test to screen for risk of the most common forms of breast cancer

deCODE Breast Cancer enables women to understand whether they may benefit from more intensive screening, monitoring or preventive drug therapy.

deCODE Breast Cancer enables women to understand whether they may benefit from more intensive screening, monitoring or preventive drug therapy.

Reykjavik, ICELAND, October 8, 2008 – deCODE genetics today announced the launch of deCODE BreastCancer™, a new tool for assessing risk of the common forms of breast cancer. For the first time, a woman concerned about breast cancer can speak with her physician about a genetic test to better understand her lifetime risk of developing the common forms of the disease.

The common forms of breast cancer result from the interplay of genetic as well as environmental and lifestyle factors and represent 95 percent of all breast cancers. These are distinct from the rare and essentially purely inherited forms of the disease due to mutations in the BRCA1 and BRCA2 genes, which cause between 1 and 3 percent of breast cancers. deCODE BreastCancer™ is a DNA-based reference laboratory test performed using a simple blood sample or cheek swab, ordered by physicians on behalf of their patients.
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Genetic test was an investment in myself

Jack Doughery says deCODEme genetic test was an investment

Jack Doughery says deCODEme genetic test was an investment

Jack Doughery feels great and wants everyone to know it.

“I almost feel evangelical about my health,” says the 62-year-old businessman from Spokane, Washington. “I’m so excited about what can happen if you do the right things and have the right tools.”

Jack started doing the right things once he began what he calls his journey, which kicked off one day after waking up at three in the morning craving a cigarette.

“When you’re waking up at three in the morning, coughing and spluttering, and the only way to calm down is by smoking a cigarette, you don’t have to be too smart to know this might not be the way to go. It got my attention,” he remembers.

One of Jack’s first stops along his grand trip was at Spokane’s Heart Attack and Stroke Prevention Clinic, run by nurse practitioner Amy Doneen. It was Doneen and Dr. Bradley Bale who put Jack on the path to prevention, helping Jack to reshape his life using diagnostic testing, nutrition and exercise.

Recently, Amy Doneen began using a new test to help alter Jack’s journey—deCODEme, a genetic test that scans a patient’s genome for markers relating to 30 various diseases. The deCODEme genetic test gauges a patient’s average and lifetime risk of developing diseases such as Alzheimer’s, heart attack, prostate cancer, and most recently bladder cancer.

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Your genome, your choice: a buyer’s checklist for genetic tests

Scientists at deCODE genetics' Genetic Service Facility lab in Iceland

Scientists at deCODE genetics Genetic Service Facility lab in Iceland

The number of companies offering genetic tests to the public is large and growing. But there are vast and very real differences in the quality, purpose and price of testing services out there. So how do you tell the difference between them? And how do you decide which to use?

Knowing what you want

First and foremost, you need to think about what sort of information you hope to gain from your genome and how accurate you want the results to be. Are you taking the test only for fun, perhaps hoping to talk about your results on Facebook? Read More »

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deCODE and Radboud University discover common variants in the human genome conferring risk of bladder cancer

Urinary bladder cancer is something many people have never heard of. But it is the sixth most common form of cancer in the United States, and its environmental risk factors include exposure to toxic chemicals, including some used in industrial processing as well as cigarette smoke. Genetic factors also play a role and may help to elucidate how bladder cancer starts and develops.

Today, deCODE’s cancer group and colleagues at Radboud University in the Netherlands report the discovery of two single letter variants (commonly referred to as SNPs) in the human genome that confer increased risk of bladder cancer. Both are common, and 20 percent of people of European descent carry two copies of the highest impact SNP, located on chromosome 8q24. That puts them at about 50 percent higher likelihood of developing bladder cancer than people who do not carry the variant.

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Not all genetic tests are created equal

Here are a few thoughts on Nic Fleming’s piece on personal genome scans, of which one was our own, deCODEme:

Our genomes are all remarkably similar. And so it is the differences that are most interesting and important, and that make us who we are.

The same can be said of genetic testing services. We at deCODE were not at all surprised that Mr. Fleming found that he got some varying results from the three genome scans that he tried. Indeed we would be surprised (and more than a little dismayed) if he hadn’t. Analyzing the genome - accurately detecting which genetic markers individuals have at specific points in the genome, and correlating these variations with risk of a range of common diseases - has been our bread and butter for well over a decade. Read More »

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A hypocondriac meets deCODEme and comes out eating apples

A hypocondriac meets deCODEme and comes out eating apples, by Edward Weinman

By Edward Weinman

With a simple swab from the inside of your cheek, deCODE genetics can scan your DNA, map your markers and assess your risk of developing 29 common diseases. Edward Weinman, self-described hypochondriac, wonders if he should look too closely at his possible future.

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Iceland wins silver in handball at the Olympics

Icelandic handball team celebrates silver at the Olympics

Icelandic handball team celebrates silver at the Olympics

Icelandic handball has never enjoyed such a high profile in the US press, and deservedly so. Having just won the silver in the men’s Olympic final, Iceland is one of the smallest nations to win any kind of Olympic medal. American and European journalists and bloggers, seemingly never tired with playing up Iceland’s Viking image, appear to have hit the nail on the head this time. Perhaps it is their Viking genes! Read More »

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How much did Boonsri Dickinson learn from her home DNA test?

Science journalist Boonsri Dickinson

Science journalist Boonsri Dickinson

Discover magazine reporter Boonsri Dickinson recently tried out deCODEme, as well as two other genetic scans offered by California-based websites. She discusses her results, and talks to several people who question whether genetic scans should be available to the public. Dickinson seems to be happy she had the chance to take a look at her genome, and went over her results with deCODE CEO Kari Stefansson. She notes that as “deCODE is known for discovering genetic risk factors…I decided to use deCODEme to validate the other two,” concluding that “deCODE genetics was authoritative.” Her article, ‘Inside Out: A DNA Diary,’ appeared on newsstands in August and can be found on the Discovermagazine.com website.

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