Scientists developed the app to help recruit people for a massive genetic study. The project, which could draw scrutiny from ethicists and federal regulators, has the potential to go viral with Facebook’s help.
Genes for Good / Via Facebook: genesforgood
A medical research study launched Tuesday aims to screen the genes of at least 20,000 people. Part of a surging tide of genetic research, this project would be unremarkable if not for the place it's recruiting and communicating with volunteers: Facebook.
The scientists behind the project, Genes for Good, hope that Facebook users will send a tube of their spit to a laboratory at the University of Michigan and use a free Facebook app to fill out periodic surveys about their health, habits, and moods.
The scientists will screen the volunteers' DNA to try to discover new links between certain genetic variants, health, and disease. To rigorously establish these links, the researchers will need to enlist tens of thousands of volunteers from a wide variety of backgrounds.
"We're really hoping that the main reason people will join is to say, 'Hey, my health and genetic information is valuable. I would like to share it and put it to good use,'" Gonçalo Abecasis, professor of biostatistics at the University of Michigan and one of the leaders of the project, told BuzzFeed News. "Hopefully that will be the major motivator."
Abecasis and his colleagues stress that the Facebook app is a digital portal, and that Facebook will not have access to volunteers' personal information. From the scientists' perspective, Facebook is simply a communication service: a smart way to recruit the massive number of volunteers needed to carry out complex genetic studies. "The standard ways of collecting information on people don't really scale," Abecasis said.
Genes for Good could go viral if it taps into the public's altruistic streak — as did Facebook's organ donation status field, get out the vote campaigns, and the Ice Bucket Challenge.
On the other hand, some people are growing wary of Facebook's reach into seemingly every aspect of life, and all of the privacy and security concerns that come with that. What's more, the new app comes at a time when the Food and Drug Administration (FDA) is beginning to crack down on genetic tests of all sorts.
"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."
Genes for Good / Via Facebook: genesforgood
They will be able to track how their answers to surveys — such as the age that they smoked their first cigarette, what time they went to sleep the night before, and how extroverted they are — compare to other volunteers.
They'll also get some insight into their genomes. The researchers will extract DNA from each saliva sample and screen it for about half a million genetic markers. Some of these give clues about ancestry, which the researchers will interpret for volunteers. For example, the Facebook app creates a pie chart showing the proportion of the volunteer's ancestors who came from Europe, Africa, East Asia, and other areas of the world.
The researchers are keenly interested in markers with medical relevance, and will begin by taking a close look at about 100 genes. Certain genetic variants in the APOE gene, for example, increase the risk of Alzheimer's disease.
For now, following recommendations of the project's ethical review board, the researchers aren't going to tell study volunteers anything about their genetic risk of disease. Participants will be able to download an encrypted file with all of their raw genetic data, however, and those who are savvy about genetics could dig into their health-related DNA markers.
"There are rogue websites out there" — such as SNPedia — "where you can upload genetic data and get some kind of interpretation back about disease risks," Scott Vrieze, an assistant professor of psychology and neuroscience at the University of Colorado, Boulder, and co-leader of the new app, told BuzzFeed News.
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