Hospitals, Pharma, Startups

Duke and LabCorp turn mill town into a biobank using Facebook’s business model

Jaron Lanier is a computer scientist who thinks that Facebook should pay users for their […]

Jaron Lanier is a computer scientist who thinks that Facebook should pay users for their data. After all it’s the content from individual users that has enabled the company to become a billion-dollar business ($1.81 billion in Q2 2014). Without users posting comments and pictures and links, what does Facebook have? Nothing. How do users benefit from donating all this information? They get to stay in touch with people, yes, but users also provide detailed market research for free – and get to participate in manipulative research projects at no extra charge.

The story of a former mill town in North Carolina shows how biobanks could build the same business model that Facebook has used so successfully. The BioMarker Factory is getting residents to donate their genetic information with all the financial benefit going to the bank and none to the individuals.

The short backstory of this project is that a billionaire who is obsessed with eternal life bought the mill in Kannapolis, North Carolina, that used to be the town’s main employer – 4,300 jobs. David H. Murdock tore down the factory and is building a biotech research center in its place. The plan is to conduct life sciences research and ultimately bring 5,000 highly skills jobs to the town. Currently there are plenty of opportunities to make a little money as a research subject. Kannapolites can earn anywhere from $30 to $250 by participating in studies of nutrition, longevity, or cognitive or physical performance.

By far the most ambitious and prominent of these studies was launched in 2007 with a $35 million donation from Murdock himself. Conducted by Duke University’s Translational Medicine Institute at the Kannapolis campus, the MURDOCK Study, as it’s called, aims to collect and bank three tablespoons of blood and urine, family medical histories, and electronic health records from 50,000 locals… Using all that biological material and health data, the researchers plan to search for patterns in the interplay between genes, life histories, and chronic disease. The hope is that this will inform the creation of new predictive tests, diagnostics, and even treatments that can be matched to individual genetic profiles….

As part of the enrollment process, recruiters walk each potential participant through the study’s mandatory consent form. The recruiter tells locals they can withdraw at any time, that samples are de-identified… that they will receive no personal results or benefits, and that their samples may be used to create commercial products they will not benefit from.

In exchange for their participation, contributors receive a $10 gift card to Walmart. So far, over 10,000 people have joined the study.

Analysts predict that the market in gene-based prescriptions and disease diagnostics will reach $42 billion by 2015, and the prospect of such a bonanza has set off a race to collect data and biomaterial. … The more samples a biobank holds — and the more data it can generate — the better that data can be leveraged over time to identify robust links between genetic information and disease. And any given link could be the basis of, say, a patentable, lucrative diagnostic test.

To translate its own discoveries into products for market, Duke has created a spinoff company called — cutely, for a venture anchored in a former manufacturing town — the Biomarker Factory. The spinoff is a joint venture with LabCorp, one of the largest clinical lab testing firms in the U.S. In the partnership, Duke brings biological material to the table — 20 percent of the samples from the MURDOCK Study — and LabCorp brings cash: $24 million. The goal of the new company is to rapidly turn discoveries from the MURDOCK Study into intellectual property and lab-test products.

And one in which major firms create value by harvesting the personal data of ordinary people — whether from a sample of their blood or the details of their Facebook page — and then monetize that data in proprietary maneuvers that those people barely comprehend.

For the article about Kannapolis on Pacific Standard magazine, Amanda Wilson talked to a researcher at the University of North Carolina-Chapel Hill’s School of Medicine who said that biobanks are not like traditional research projects that allow participants to withdraw at some point. Jean Cadigan, an anthropologist who studies participation in biobanks, said that these new projects want blanket consent for all possible future research uses.

“I don’t really know how to wrap my head around that. How does an individual give informed consent for infinity?”

Before you post your “But of course people should want to help science and save lives and be altruistic and donate their genetic information!” comment, think about this. Doctors are worried about being replaced by robots. Factory workers – like the ones building the Murdock bio bank – have ALREADY been replaced by robots. Their physical labor has no value in the job market. They would be foolish to give away their data – which is the most valuable commodity they have in the 21st century.

Veronica Combs

Veronica is an independent journalist and communications strategist. For more than 10 years, she has covered health and healthcare with a focus on innovation and patient engagement. Most recently she managed strategic partnerships and communications for AIR Louisville, a digital health project focused on asthma. The team recruited 7 employer partners, enrolled 1,100 participants and collected more than 250,000 data points about rescue inhaler use. Veronica has worked for startups for almost 20 years doing everything from launching blogs, newsletters and patient communities to recruiting speakers, moderating panel conversations and developing new products. You can reach her on Twitter @vmcombs.

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