Health IT

UMich’s Facebook-based genomics project emulates 23andMe – except it’s free

Emulating the 23andMe model of spit-send-sequence, a new app called Genes for Good is soliciting Facebook users to send their genetic and phenotypic data to researchers at the University of Michigan. Like 23andMe, users get to learn about their ancestry. Unlike 23andMe, it’s free. The idea is to help expand genomics research at UMich: Users are solicited via Facebook to fill out questionnaires about their […]

Emulating the 23andMe model of spit-send-sequence, a new app called Genes for Good is soliciting Facebook users to send their genetic and phenotypic data to researchers at the University of Michigan. Like 23andMe, users get to learn about their ancestry.

Unlike 23andMe, it’s free.

The idea is to help expand genomics research at UMich: Users are solicited via Facebook to fill out questionnaires about their health and lifestyle, then asked to send in vials of saliva which are sequenced. Genes for Good is looking for 20,000 participants, to help draw associations between the genomic information obtained and the self-reported phenotypic data from users – and suss out the root cause of disease.

It’s a popular concept – Obama wants to do quite the same with the whole Precision Medicine Initiative. But Genes for Good’s methods may draw ethical concern, a thoughtful piece from BuzzFeed News reports: Despite the academic safety net, this study may draw the same regulatory and data privacy issues that companies like 23andMe and Facebook itself face.

A winning point to consumers: This is pure research, so it’s free. By contrast, 23andMe basically does quite the same thing – with a hefty price tag. 23andMe’s direct-to-consumer genetic testing service has expanded its research arm considerably, going so far as releasing a new therapeutics division. But it still costs $99 to get basic information from the company, and to participate in the company’s research interests – which it sells to pharma giants like Roche. Studies like this call into question the rationale behind paying a company to do what a research institution might provide for free.

Like 23andMe, the Genes for Good app will offer ancestral data to the participants. But it too will avoid telling users of any inherent genetic health risks, thanks to all the squiffy FDA regulations that have clouded the playing field for companies like 23andMe, Pathway Genomics and the like.

“Some people are going to freak out about this,” Michelle Meyer, an assistant professor at the Union Graduate College-Mt. Sinai Bioethics Program, told BuzzFeed News. “DNA and Facebook are two words that most people do not want to hear in the same sentence.”

Because of this, the regulatory implications of a project like Genes for Goodwill be interesting to observe – particularly as Genes for Good hasn’t yet discussed its project with the FDA. 

“We were hoping that this is a little different because it’s a research project,” Gonçalo Abecasis, professor of biostatistics at the University of Michigan and one of the leaders of the project, told BuzzFeed News. When doing research, he added, “you can do a wider range of things” than if selling a product or creating a proprietary database.

Misha Angrist, a social science professor at Duke University, told BuzzFeed News she thinks the FDA will balk at this program, just as it’s shut down similar efforts in the private sector.

“To just say, ‘Hey, we’re research and we’re free’ is not going to satisfy the paternalists of the world,” he said.

Notably, the BuzzFeed article highlighted that this study’s only hope for success is its ability to go viral – otherwise, it won’t be able to recruit its own wide set of research subjects. This brings in issues of meaningful consent – does a Facebook survey count as sufficient for giving up personal health information? Furthermore:

“We’re not planning to sell the data,” Abecasis told BuzzFeed News, “but we would like people to use it and we’re very open to commercial places using it based on the same basis as everybody else.”

 

[Image courtesy of Genes for Good site]