Mon, Aug 06, 2018 - Page 7 News List

Pharmaceutical companies race to unlock value in genetic data

As established players in the home DNA-test market make deals to monetize client data, a number of start-ups are aiming to give clients more ownership — but in genetic research, scale matters

By Ben Hirschler  /  Reuters, LONDON

Illustration: Yusha

How much is your DNA worth? As millions of people pay for home tests to check on ancestry or health risks, genetic data is becoming an increasingly valuable resource for drugmakers, triggering a race to create a DNA marketplace.

GlaxoSmithKline’s (GSK) decision to invest US$300 million in 23andMe and forge an exclusive drug development deal with the Silicon Valley consumer genetics company crystallizes the value locked up in genetic code.

The tie-up is the biggest yet involving home DNA testing, a market dominated by 23andMe and, which charge less than US$100 for a saliva-based test, but can also gain voluntary consent from clients for their data to be used by third parties.

However, a number of new start-ups are beginning to offer people the chance to own their genetic information and sell it to data-hungry drug researchers.

Firms like EncrypGen, Nebula Genomics, LunaDNA and Zenome are using blockchain — the technology behind bitcoin — to secure sensitive DNA records and create a transaction ledger. The new players all have slightly different models, with most simply providing data platforms on which people are rewarded for providing data, although Nebula also plans to offer testing.

The idea of using genetic factors to hunt for better drugs has been around for more than 20 years, but it is only now becoming possible to gather a large enough sample to spot the rare variants responsible for many diseases.

The number of people who have had their DNA analyzed with the main testing companies has taken off since 2016 and now stands at about 17 million, cofounder David Mittelman said.

By 2021, the figure could be more than 100 million, he said.

For drugmakers like GSK, which announced its 23andMe deal last week, access to this data offers a way to accelerate drug development, as finding a drug target linked to a human genetic variant doubles the chance of producing a new medicine.

The interest in home DNA tests, which can reveal genetic variants that might influence the chances of developing diseases including Alzheimer’s, is part of a wider drive by drugmakers to tap into a range of anonymized patient data.

Roche, for example, has spent US$4.3 billion this year buying out two specialists in cancer data, Foundation Medicine and Flatiron Health.

The trend has raised worries among campaigners about data security and privacy.

In a bid to alleviate concerns,, 23andMe and other consumer genetic testing companies have now set out a “best practices” framework to ensure express consent, strong security and transparency on data use.

University of Queensland research fellow Caitlin Curtis said he estimates that 23andMe has made about US$130 million selling access to about 1 million genotypes prior to the GSK deal, implying an average price of about US$130.

23andMe chief executive Anne Wojcicki said she believes that her clients simply want to help find new treatments for intractable conditions, such as Parkinson’s disease — the focus of the first drug research project with GSK — and her company has no plans to give clients rebates if their data are sold on.

“People who have a disease or a family member with a condition are really interested in what they can do to help come up with a solution,” she said in an interview.

A spokesman for said that his group did not have any current relationships with for-profit organizations, although it is working with some academic institutions.

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