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Do patients who donate genetic information to research deserve financial compensation?

| | March 15, 2016

This article or excerpt is included in the GLP’s daily curated selection of ideologically diverse news, opinion and analysis of biotechnology innovation.

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Scientists today rely on thousands of donors to share their health information. This data is often stored in giant databases called biobanks, and combined with the medical record. President Obama is hoping to collect about 1 million people’s DNA for a huge new biobank, which would spur important medical research.

But new business models are emerging in the private sector that demonstrate the monetary value of our DNA. It’s a little known fact that 23andMe, the direct-to-consumer genetics company, makes its money by selling people’s health data to pharmaceutical companies in bulk for thousands of dollars. (23andMe’s business model involves analyzing its customers’ DNA on behalf of pharma companies, including Pfizer and Genentech.)

For this, and other reasons, some patient advocates are calling for patients to get a slice of the revenues. “I think there may be an economy emerging, in which we might want to figure out how to include them (donors) in the commerce that is taking place around clinical recruitment,” says Sharon Terry, founder and CEO of the nonprofit group Genetic Alliance, which advocates on behalf of people with genetic diseases.

According to Terry, doctors are also being paid to recruit patients in clinical trials; so why not the patient themselves? “We are actually considering a credit system whereby individuals, their communities and our platform could all have a ‘credit’ in a system of commerce,” she explains.

Read full, original post: Should You Get Paid For Your DNA?

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