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Longstanding Genetic Testing Website GeneTests Closing

NEW YORK (GenomeWeb) – The medical genetics information resource GeneTests.org will close on Dec. 1.

"There are now other non-lab affiliated resources available that collect the same data," Opko, the parent company of  Bio-Reference Laboratories, said in a statement. "So, as a clinical diagnostic laboratory, it was felt unnecessary to continue this effort."

According to information posted on GeneTests.org, the resource contains data on more than 68,000 genetic tests, 5,000 inherited disorders, 6,000 genes, 700 labs, and 1,000 clinics. The repository was launched in 1992, at the dawn of the medical genetics field, and run by the National Institutes of Health. It has been readily utilized by doctors, geneticists, and genetic counselors looking for information on inherited disorders, and testing and counseling services.

However, in 2012, at a time when the genetic testing industry was growing at a rapid clip, the NIH launched a more detailed resource, called the Genetic Testing Registry, developed by the National Center for Biotechnology Information. While the older website focused on tests for Mendelian disorders, GTR promised to provide more information on many other kinds of tests and labs had to fill in minimum data fields in order to list on the site. The NIH planned to phase out GeneTests.org within a year.

In 2013, however, Bio-Reference stepped in and licensed GeneTests from the University of Washington, which developed the original resource. In an announcement at the time, Bio-Reference (later acquired by Opko) estimated the website had 22,000 daily visitors, because users appreciated the simplicity of GeneTests compared to GTR.

In recent years, GTR has taken off. According to data posted on the GTR website, the newer registry lists more than 54,000 tests, including those assessing single genes, panels of genes, pharmacogenetics, somatic variants, as well as whole genomes and exomes. The tests gauge more than 16,000 genes implicated in around 11,000 conditions. More than 500 labs around the world have submitted to GTR.