This New Facebook App Wants to Collect Your DNA for Research
When Mark Zuckerberg launched Facebook from his Harvard University dorm room in early 2004, he likely had no idea how sprawling it would become. Eleven years later, the social network has its finger in every pie imaginable, and it's left almost nothing — news, gaming, literature, even banking — untouched.
The latest frontier? Science. Specifically, genetic research.
A medical initiative from the University of Michigan called Genes for Good plans to use Facebook as a platform to find participants for a massive genetic sequencing study, the results of which may give researchers clues about the roles our genes play in certain diseases and behaviors. Scientists are hoping to harness Facebook's enormous user base, as well as its affection for viral sensations, to help make the volunteer pool as large as possible.
"A lot of genetic questions about health and behavior require really large samples of individuals," Scott Vrieze, an assistant professor of psychology and neuroscience at the University of Colorado Boulder and one of the study's lead researchers, told Mic. "We're trying to design a system where we can scale to very large samples. ... We thought, if we can use the Facebook platform to help use the research forward, that's great."
Though the study is not officially affiliated with or sanctioned by the social network, the study will live in a Facebook app where users can complete recurring surveys about their health history and habits. Once they've filled out enough questionnaires, they're eligible to send in a saliva sample; researchers will then extract their DNA and analyze it. A user's genetic information is then compared to his or her health history "in order to find genes that affect risk for disease," according to the project's website.
The project, which had a soft launch in January but has recently started to gain steam, has the funds to genotype 20,000 people. The researchers hope to continue the study beyond just one visit to the app; a sudden cancer diagnosis, for example, would have a significant effect upon your data. "It's really the most valuable if people keep coming back and keep engaging," Vrieze said.
Besides providing users with a copy of their survey data, the study will also send willing participants a copy of their raw, uninterpreted genetic data. In other words, if you choose to see your genome, you'll receive only that — not any indications that you may have specific genetic markers or be predisposed to certain conditions.
But Vrieze said the possibility of genetic interpretation by Genes for Good isn't out of the question. "Right now it's just the raw data," he said. "We're working on plans. We are working on the issue and seeing if it's feasible. It's something we would like to do if it was possible to do it."
The privacy issue: On the surface, Genes for Good appears to be a remarkably innovative and altruistic approach to genetic researching. "Essentially, what we're trying to do is to enable future genetic studies," Vrieze said.
But the idea of using Facebook to accomplish this is, at the very least, unsettling. Facebook already has access to numerous parts of our lives and utilizing it to help map our DNA — the thing that makes us most unique — is bound to set off alarm bells for some.
Vrieze, however, is adamant that privacy fears are unfounded. Besides the fact that users must give informed consent if they wish to participate, he also stressed that Facebook won't have access to any user data.
"The app is presented within an encrypted IFrame within Facebook," he said. "So the user, when they're interacting with our app, they're interacting directly with our secure server at the University of Michigan through an encrypted connection. Facebook can't really take a sidelong glance.
"Facebook will know if you've installed the app, and when you're using it. But beyond that, it's like a black box. They can't tell what's happening inside it, they just know that you got it."
But what about the ethics of the matter? Giving users access to their genetic data brings up myriad questions about medical ethics. While Genes for Good isn't making any judgment calls about this data (for now), other services are more than happy to. But these non-FDA regulated organizations can spit back any number of interpretations, some of which can have serious ramifications.
"The researchers are giving back data that someone else presumably will interpret, and the interpretation could have implications for that participant's health and personal life-decision making," Josephine Johnston, a bioethicist and the director of research at the Hastings Center, a nonpartisan bioethics organization, told Mic. "And the researchers are hands off about that, but that doesn't mean they don't have a responsibility to help people navigate that."
For example, if, after inputting their genetic data somewhere, a user discovered that she was predisposed to a certain kind of cancer, she may make health and lifestyle choices based on that information — choices that could be costly or untested.
The real danger, Johnston said, is in the uncertainty of the field itself — there's still a great deal researchers don't understand about genetic mapping.
"You could end up putting too much weight on information that isn't really that strong yet," she said. "And maybe that wouldn't matter if it were about something frivolous — [but] it's often about really important ethics of somebody's medical future or potential and current health."
Other DNA-testing companies, like 23andMe, have run foul of the Food and Drug Administration because of this. In 2013, the agency ordered 23andMe to halt production of their tests, due to the possibility of "false positive or false negative assessments for high-risk indications." They allowed them to return to their business in February, but only for one kind of genetic test.
The debate over access to personal information: Vrieze said that the project hasn't run into problems with the FDA, primarily because it has yet to offer interpretative services to users. But even so, he believes that participants should be entitled to their results — it's their body, after all.
"I'm of the mind that it's their body. We've discovered something about their body. And I feel like they should know. I don't know if they have a right to know, but we should tell them if we can," he said.
As for the potential pitfalls involved in providing regular people with information that's still not fully understood, Vrieze argued that we already have access to plenty of medical information. "We put blood pressure monitors in Walgreens, for example. This is maybe a little different because it's more complex, [but] maybe that makes it more innocuous. It's really hard to understand, where blood pressure is more straightforward."
But, he added, "It's an open question, and I think it's a good question."
In the end, he sees it as his job to provide this kind of intelligence. "I felt like I had a duty as a scientist to [return this kind of information]," he said. "Reasonable people disagree, but that's how I see it."