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 Ancestry.com, 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, DNAGeeks.com 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, Ancestry.com, 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 Ancestry.com said that his group did not have any current relationships with for-profit organizations, although it is working with some academic institutions.
Ancestry.com did have a 2015 deal with US biotech company Calico, the financial terms of which were not disclosed, but that has now ended.
The ability of genetic testing companies to rake in cash twice rankles with some, including geneticist George Church — the Harvard University scientist famous for wanting to resurrect the extinct Woolly mammoth — who is one of the founders of Nebula.
Nebula aims to eliminate the personal genetics companies as intermediaries between data owners and data buyers, a notion shared by rivals such as EncrypGen chief executive David Koepsell.
“We think people are going to get savvy about how their data is being sold and they are going to want a piece of that action,” Koepsell said in an interview. “Our whole model is about creating a market. People can upload and set a price for their data, and then we will see what the market will bear.”
People selling data on EncrypGen’s system will receive DNA tokens, a cryptocurrency. Other players have different plans, with LunaDNA’s community-owned database offering shares that are to generate dividends as researchers pay to access data.
Peter Pitts, president of non-profit healthcare research group the US Center for Medicine in the Public Interest, said he agrees that handing over DNA deserves financial recompense when the benefits flow to for-profit companies.
“People need to realize that they are actually paying for companies to monetize their most personal information and they are getting nothing for it,” he said.
LunaDNA cofounder Dawn Barry, who used to work at leading gene sequencing company Illumina, said that she does not expect people to make “life-changing money” from selling DNA.
However, she added: “People feel good about the transparency and control and respect that they get by being equitable partners in discovery research.”
It will not be plain sailing for the new upstart companies.
One of the main attractions for GSK in doing a deal with 23andMe is that the Google-backed Californian company has more than 5 million clients, more than 80 percent of whom have consented to participate in research and share their data.
EncrypGen, by contrast, which launched its first storage product earlier this year, has just 1,000 profiled users, about 100 of whom have uploaded DNA data so far.
When it comes to using DNA to understand the links between genetics and disease, scale matters.
“To do the analyses that are required to understand these complex links between genetics and disease, you need massive datasets,” Curtis said. “It’s hard to know how well these kinds of start-up platforms will scale up as research projects aim for millions of participants.”
Late last month, Beijing introduced changes to school curricula in the Inner Mongolia Autonomous Region, requiring certain subjects to be taught in Mandarin rather than Mongolian. What is Chinese President Xi Jinping (習近平) seeking to gain from sending this message of pernicious intent? It is possible that he is attempting cultural genocide in Inner Mongolia, but does Xi also have the same plan for the democratic, independent nation of Mongolia? The controversy emerged with the announcement by the Inner Mongolia Education Bureau on Aug. 26 that first-grade elementary-school and junior-high students would in certain subjects start learning with Chinese-language textbooks, as
For the Chinese Communist Party (CCP), China’s “century of humiliation” is the gift that keeps on giving. Beijing returns again and again to the theme of Western imperialism, oppression and exploitation to keep stoking the embers of grievance and resentment against the West, and especially the US. However, the People’s Republic of China (PRC) that in 1949 announced it had “stood up” soon made clear what that would mean for Chinese and the world — and it was not an agenda that would engender pride among ordinary Chinese, or peace of mind in the international community. At home, Mao Zedong (毛澤東) launched
There are worrying signs that China is on the brink of a major food shortage, which might trigger a strategic contest over food security and push Chinese President Xi Jinping (習近平), already under intense pressure, toward drastic measures, potentially spelling trouble for Taiwan and the rest of the world. China has encountered a perfect storm of disasters this year. On top of disruption due to the COVID-19 pandemic, torrential rains have caused catastrophic flooding in the Yangtze River basin, China’s largest agricultural region. Floodwaters are estimated to have already destroyed the crops on 6 million hectares of farmland. The situation has been
The restructuring of supply chains, particularly in the semiconductor industry, was an essential part of discussions last week between Taiwan and a US delegation led by US Undersecretary of State for Economic Growth, Energy and the Environment Keith Krach. It took precedent over the highly anticipated subject of bilateral trade partnerships, and Taiwan Semiconductor Manufacturing Co (TSMC) founder Morris Chang’s (張忠謀) appearance on Friday at a dinner hosted by President Tsai Ing-wen (蔡英文) for Krach was a subtle indicator of this. Chang was in photographs posted by Tsai on Facebook after the dinner, but no details about their discussions were disclosed. With