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Drug Companies Pay for Exclusive Access to UK Genetic Data

Four of the world’s largest drug companies have agreed to pay around $120 million for exclusive access to genetic data on hundreds of thousands of people. Amgen, AstraZeneca, GlaxoSmithKline, and Johnson & Johnson will each have nine months to pour over the first wave of genomic data coming out of UK Biobank before the global research community gets a chance to look at it. That initial wave will be available at the end of March 2020, and include data from roughly 125,000 participants, according to a Wednesday statement from UK Biobank, a charity supported by the U.K. government. The drugmakers will receive a similar exclusivity period in early 2022, when UK Biobank anticipates finishing its overall goal of 500,000 sequenced genomes. The organization noted how deal terms “mirror” another project it’s working on that sequences exomes in partnership with Regeneron and manufacturers.

Drug companies see genetic data as a valuable tool for guiding R&D, and have been willing to shell out millions of dollars to get their hands on it.

In 2012, Amgen acquired deCODE Genetics, an Icelandic company focused on the relationship between genomes and disease, in a deal valued at $415 million. According to Amgen, deCODE’s gene discovery engine now has data from approximately 1.6 million participants from around the world. More recently, GlaxoSmithKline made a $300 million equity investment in genetic sequencing provider 23andMe.

UK Biobank’s data are attractive as well. Through their work on the exome project, Regeneron and GSK made available earlier this year the exome sequences for 50,000 people participating in UK Biobank. A Regeneron-led consortium that includes AbbVie, Pfizer and several other big-name drugmakers plans on sequencing the remaining 450,000 participants by 2020, with the release of an additional 100,000 exomes expected in April.

While genetic testing has become more commonplace, especially with the rise of at-home testing kits, it is also being met with concerns over data privacy. STAT last year reported that two Democratic lawmakers sent some genetic testing companies a letter questioning their security systems and privacy practices. Before that, Senate Minority Leader Chuck Schumer, D-NY, called on the Federal Trade Commission to look into how those kinds of companies were handling consumer data.

Three testing companies, Ancestry, 23andMe and Helix, recently established a coalition that effectively serves as a Washington lobby, suggesting that the push and pull between industry and lawmakers is just getting started.

Back across the Atlantic, UK Biobank is collecting a significant cash infusion. In addition to the 100 million British pounds, equivalent to about $123 million, that it’s collecting from drugmakers, the organization also announced two other investments each totaling 50 million pounds. One was from the U.K. government’s research and innovation agency, the other from The Wellcome Trust, a research charity based out of London.

For its whole genome project, UK Biobank tapped the Wellcome Sanger Institute and deCODE genetics to help with the sequencing. The Sept. 11 statement claims that sequence data on 500,000 people is “roughly equivalent” to 600 billion pages of text.

That quantity of data, along with the collection of additional health and lifestyle data, takes significant time and resources.

“The scale of this sequencing program presents unique technical challenges in storing and analyzing such vast amounts of data,” Amgen said in a statement about its investment into UK Biobank.