News from 20 years ago

Iceland’s Genes Frozen in Time

2020-11-19T18:07:42

An Icelandic company that has drawn criticism for mining the medical information of the country’s citizens has found 350 genes linked to more than 40 common diseases.

Photo by Joel Mott on Unsplash

Since 1999, the company has been sifting through the medical records of Iceland’s population, which has changed little in genetic makeup since the Vikings arrived in the ninth and 10th centuries.

Since the DNA of Icelandic people is so unchanged, it’s easier for researchers to pick out genes that are different and possibly associated with disease.

But groups including Mannvernd opposed the project because Icelandic citizens were required to opt-out if they didn’t want to participate in DeCode’s research. But if they weren’t aware of the research, their medical records could be used without their knowledge.

According to Mannvernd, more than 20,000 people have opted out so far. The group has filed a lawsuit against DeCode.

“The identification of these targets is a resounding confirmation of the power of our data-mining tools and of the inherent strengths of our population approach and integrated data,” said Kari Stefansson, CEO of DeCode.

Patent offices in the United States and Europe have become more stringent about granting gene patents after companies like Incyte Genomics (INCY) and Human Genome Sciences (HGSI) patented thousands of genes without necessarily knowing much about them.

But Stefansson is confident DeCode will secure patents since his discoveries include information highlighting pathways that link genes to disease.

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Variations on a gene theme: The National Institutes of Health has granted $2.2 million to a biotech company in San Diego to characterize the largest number of human gene variations to date.

Sequenom (SQNM) has been granted the funds to use its MassArray biochip technology to search through its database of 100,000 gene variations — called single nucleotide polymorphisms, or SNPs (pronounced snips) — and try to figure out what diseases they might be associated with.

Researchers who study these tiny variations go a step beyond the Human Genome Project, the publicly funded effort to identify the specific genetic differences that make people more prone to a certain disease, or react differently to drugs.

By identifying SNPs, researchers hope to develop personalized medicines and diagnostic tests.

Of the roughly 3 billion nucleotides in the human genome — the A, C, T and G pairs, or rungs of the ladder in DNA — 99.9 percent are the same for everyone. Some of the SNPs that occur in the remaining 0.1 percent account for the differences among people.

Within this 0.1 percent, scientists estimate there are about 3 million SNPs in any individual, and there could be up to 12 million of the variations among the entire population.

Sequenome has stockpiled 100,000 SNPs through projects with the National Cancer Institute and GlaxoSmithKline.

“This study represents the most aggressive genome-wide association effort ever undertaken,” Toni Schuh, PhD, Sequenom’s president and CEO, said in a statement. “The patient resources for such an endeavor certainly exist; what has been lacking is a technology capable of searching the entire genome for associated genetic variations in a timely and cost-effective manner.”

Sequenom says it has the technology

Wired, Nov. 12, 2001

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