23andMe Offers Free Genetic Tests to African Americans

Credit: Technology Review

BIOMEDICINE

Studies show that the genetic risk of disease varies between different ethnic groups, and data on some groups is lacking.

• BY EMILY SINGER

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To date, research into the genetic cause of disease has been overwhelmingly white.

Of the participants in the most common type of genetic disease study, 96 percent are of European descent. Growing evidence suggests that the results of these studies, which encompass hundreds of thousands of people, may be less relevant or even irrelevant to those in other ethnic groups.

23andMe, a direct-to-consumer genetic testing company, aims to shift the balance. It will offer free testing to 10,000 African Americans as part of a research initiative to expand the diversity of its genetic database. The company hopes the project, announced last week at the National Urban League conference in Boston, will shed light on the genetic basis of disease in this population. More than 1,000 people have signed up on the website in the week since the project was announced.

A major motivation behind these genetic studies is to promote personalized medicine, which is aimed at predicting disease risk and treating patients based on their genetics. Experts worry that non-European ethnic groups will miss out on this new frontier if they are not included in such research. In addition to the 23andMe effort, several large-scale genetic projects on nonwhites are now underway.

Last year, the Carlos Slim Health Institute, a nonprofit based in Mexico City, and the Broad Institute, a genomics research institute in Cambridge, Massachusetts, launched a project to study the genetic basis of type 2 diabetes in Mexican and Latin American populations, as well as the genomics of cancer worldwide. In 2008, the National Institutes of Health opened a center devoted to the study of genetics, lifestyle, and disease in minority groups.

23andMe analyzes DNA using chips designed to detect a million common genetic variations across the genome. Users, who order the test online for $99, get a customized report detailing their genetic risk for about 200 diseases and other traits. The vast majority of predictions are based on studies that were mainly of people of European descent. So it's not clear whether the findings are relevant for African Americans.

Research on a handful of diseases that have been studied across different ethnicities has shown that the genetic variants that increase risk often vary by population. Recent studies of asthma and prostate cancer, for example, have identified new disease-linked variations unique to those of African descent. Dozens of studies of Europeans have identified 19 common genetic variations linked to type 2 diabetes. But follow-up studies in a more diverse group found that five of those variations have different effects in different populations.

People of African descent tend to have high levels of genetic diversity because of the population's long history. Genetic studies of disease have focused on people of European descent in part because it has historically been easier to study groups that are genetically similar and in part because much of this research is done in Europe and North America, where this group is the easiest to access.

More sophisticated methods for analyzing genetic data that have been developed over the last few years make it possible to study more diverse populations. Geneticists have discovered that this diversity can be helpful in narrowing down the particular genetic mutation linked to a disease. However, such studies require very large groups of people. "That's part of the reason we are aiming for 10,000 individuals just to get it started," says Joanna Mountain, senior director of research at 23andMe. In addition, cheaper DNA chips mean that studies of this size are more affordable.

The 23andMe project was inspired in part by the company's work with Henry Louis Gates, director of the W. E. B. Du Bois Institute for African and African American Research at Harvard University. Gates's PBS documentaries use genetics to help people explore their ancestry. "He had been encouraging us to reach out to African Americans," says Mountain. "But I pointed out that the genetic research results to date lack information for African Americans."

Participants in the 23andMe study will be asked to fill out surveys on their general health history and common conditions, such as diabetes, allergies, asthma, and headaches. Asthma and some forms of migraines are more common in African Americans.

Rick Kittles, an associate professor at the University of Illinois who is advising 23andMe on the project, says that mistrust of research still exists among African Americans, given the disturbing history of the Tuskegee syphilis study, in which African American men thought they were being treated for the disease but were not. "As African Americans and Hispanics see themselves more and more in research, that mistrust starts to ease," says Kittles, who is African American. "But it is utterly important to have underrepresented researchers like myself and others involved in these projects."

Unlike more traditional research studies, participants will get the results of their tests and the meaning of their own genetic variations. "Our goal is to keep participants engaged and excited about research by telling them what we discovered," says Mountain. The project is part of 23andMe's growing emphasis on participatory research. It recently published the first results of a study of Parkinson's disease that identified two new genetic risk factors.

"The 23andMe project is paradigm shifting in many ways," says Kittles. "It allows people to be more proactive in understanding their ancestry and their own health."

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Why Crisis Maps Can Be Risky When There's Political Unrest

Crisis maps in hostile political situations can let the dictatorial governments, as well as the protesters, see where the action is.

• BY ERICA NAONE

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Crisis mapping conflict: Unrest in the Middle East has highlighted the need to secure crisis maps. Above, Jordanians rally in support of Syrian rebels.
Credit: Getty Images

Crisis mapping has had a major impact in the last 18 months, helping to collate information and coordinate activities during the Haitian earthquake in early 2010 and the Japanese tsunami that struck earlier this year.

But crisis mapping tools are increasingly springing up in politically fraught situations, too; most notably, they have been used to provide humanitarian relief during the protests that have swept through the Middle East in recent months. Since some authorities may want to undermine these efforts, or even attack those involved, it's becoming vital to protect these systems from interference, says George Chamales, a hacker and activist who has served as technical lead for crisis map deployments in Libya, Pakistan, and Sudan.

Crisis mapping tools—which combine communications technologies with a Web-based platform for analysis—can be used to organize information contributed by participants using mobile phones and other devices, and to display important updates on a live map.

"The groups [building] humanitarian response technology are using the same [Web 2.0] technology [hackers] are used to going after, but they're doing it in a really hostile situation where there are huge consequences if something goes wrong," Chamales told an audience of security researchers at the Black Hat conference in Las Vegas. Chamales called on the community to help test crisis map technology and protect it from sabotage.

Crisis mapping came to prominence during the Haitian earthquake, when the technology proved vitally useful to rescue efforts. But Chamales notes that the current trend is to deploy crisis mapping tools in difficult political situations. "The problem is that natural disasters don't shoot back," he says.

There have been no recorded incidents of a crisis mapping tool being misused or attacked by a political enemy so far, but this could soon change, Chamales says. For example, when a crisis map was deployed to help with flood relief efforts in Pakistan, the Taliban issued threats to foreign aid workers. "And there we were building a giant map showing exactly where those workers would be," he says.

Tense situations like the one in Pakistan have made workers and volunteers cautious. When deploying a crisis map in Libya, for example, volunteers initially kept the map private and password-protected. When they opened a map for the public, they were careful to keep that separate from the information collected for the private map. If the information on the private map were available to anyone, it could have endangered some activists.

Chamales says that crisis maps can't afford to go through the same security-related tumult that often strikes maturing technologies. In a hostile political situation, he says, leaking information could lead to people being arrested or killed. Or, if a site is knocked offline by an attack, people could lose a lifeline. "If these technologies get labeled as dangerous to run," Chamales says, "major organizations could stop using them. The information might still be out there, people might still be talking, but no one would be listening." 

Chamales will also deliver his appeal this weekend at Defcon, another Las Vegas conference, but geared toward a more informal audience of hacking enthusiasts.

One problem is that crisis maps are often set up under extreme time pressure. "We don't know the people setting this up, and the classic model is to support whoever has momentum," Chamales says.

Crisis mappers have been working with Chamales and others to implement better security. "We're hoping [Chamales] will catalyze some support to address these issues," says Patrick Meier, director of crisis mapping and new media at Ushahidi, an open-source platform that has pioneered the technology (and was originally used to collect information after Kenya's disputed elections in 2007). "The platform, as it stands, is not designed to be used in hostile environments. So every time a group or individual does so, we explicitly tell them about the security issues of using technologies in general in hostile environments."

Meier says that Ushahidi has spent months trying to get a grant to bring someone on board to help with security. In the meantime, the organization offers a long list of guidelines for communicating securely via e-mail, mobile devices, and social networks. This includes a how-to for Tor, technology that can hide a user's Web browsing; how to use strong passwords and more secure e-mail accounts; and how to encrypt instant-message conversations. 

Ushahidi also collects and posts security vulnerabilities that need to be addressed.

"Crisis mapping is a form of media, and media becomes a contested space when real-world conflicts are taking place," says Ethan Zuckerman, a board member for Ushahidi and a senior researcher at the Berkman Center for Internet and Society at Harvard University. "There's been online conflict over the #Syria hashtag, for instance," Zuckerman adds, "as pro- and anti-government forces use Twitter to communicate about the protests and government response."

Zuckerman says the community has long been taking steps to address security. For example, shortly after Ushahidi's launch, the team began a project called Swift River, designed to help people receiving real-time reports determine which ones are credible. But he adds: "As crisis maps become more prominent, it's increasingly important to consider them as contested spaces, and to take seriously the idea that adversaries will try to manipulate them."

Status Update: What's Facebook's Effect on Kids?

Credit: Technology Review

WEB

Psychologists see good and bad in social networks. On the bad side, possible links to psychiatric disorders; on the good side, increased empathy.

• BY KENRICK VEZINA

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Some parents wonder if Facebook could be harming our ability to socialize. A handful of psychologists are now starting to ask same the question.

Larry Rosen, author of several books on the psychology of technology, and a research psychologist at California State University, Dominguez Hills, is one of several researchers trying to quantify the psychological effects that Facebook is having on users across generations, with a particular eye toward teens and young adults.

Rosen has already collected some early evidence that suggests that Facebook use may somehow be connected to narcissistic behavior, alcohol dependence, and other psychiatric disorders. But he has also found evidence that Facebook use may be associated with increases in virtual empathy—the ability to consider someone else's emotional state from a distance.

Rosen has carried out surveys measuring a person's (self-reported) level of Facebook use—how often he or she reads wall postings, posted photographs, etc.—along with his or her psychological state, using classical psychological questionnaires, as well as an analysis of his or her Facebook posts.

Rosen presented preliminary findings from several research projects during a talk titled "Poke Me: Kids and Social Networking" at theAmerican Psychological Association Convention in Washington, D.C., this weekend. His was not the only talk to address this issue; "social media and technology" was one of the key subject areas of this year's convention, which gathered leading researchers from around the world.

Rosen's work is part of a broader debate over what effect the Internet is having on our minds. While some observers suggest that microblog posts, social networking updates, and other bite-sized forms of expression and communication could be making us less able to think deeply, others argue that these technologies are simply being exploited by our brains in new ways, and say such fears are common with any disruptive new technology.

Rosen's work focuses on the differences between generations, and on the way technology affects kids. "All of these technologies have to be evaluated as they impact your life," he says. Adults can evaluate and reject various technologies—he offers the example of people turning down Google+ invites—but kids lack the experience and self-control to do so, he says. They may be more tech-savvy than their parents, but they are also under greater social pressure to engage with the next big thing, Rosen argues.

Zeynep Tufekci, an assistant professor of sociology at the University of North Carolina, Chapel Hill, who specializes in the social impact of technology, suggests that parents' worries about the effects of social networks on children may be overblown. "While changes to the technological environment real are and do have important consequences, today's youth are interested in very similar things compared to past generations and are not some sort of alien race unlike any that walked the earth," she says.

Rosen cautions that his work thus far has only shown a connection between certain kinds of behavior and Facebook use, not causation. Whether Facebook encourages narcissistic tendencies in its users, for example, or happens to attract narcissistic users in the first place, is not clear yet.

At the American Psychological Association Convention, Elizabeth Carll, a clinical psychologist and author, presented a talk on the effects of cyberbullying and online harassment. She offered the observation, based on experiences at her own clinical practice, that the negative effects of cyberbullying can be more severe than face-to-face confrontations. The thing that makes it different, she says, is the fact that it's impossible to escape. "Cyberstalking is 24/7," she says. "The world knows instantly. If your boyfriend has a compromising picture of you, he can send it to anyone."

Some psychologists are more skeptical about the impact of recent technological shifts. John Suler, a professor of psychology at Rider University, says "the current fascination with technology and social media is, in my opinion, just a stage we're going through ... Over time, as the technology craze starts to quiet down, we'll realize once again that balance in online/offline activity is as important as any kind of balance in life."

Michele Strano, assistant professor in the department of communication studies at Bridgewater College, says Facebook may simply reinforce existing behavior. "Many of our Facebook friends are people we also interact with in face-to-face environments," she says. "Thus, our online and offline identities tend to have some consistent threads."

Ultimately, says Tufekci, the needs of kids today are not all that different from those of kids in the past, Facebook or no: "They want approval of their peers, are often interested in pushing and testing boundaries, and need support and love from their parents as they deal with the pressures and rewards of growing up."

iPhone-Style Touch on a Giant Screen

Scaled up: The touch-screen technology found in phones and tablets can now be used in displays several meters across.
Credit: Perceptive Pixel

COMPUTING

New technology makes multitouch possible on a five-foot-wide screen only a few inches thick.

• BY TOM SIMONITE

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The touch-sensing technology used in gadgets like the iPhone and iPad could soon be seen in screens several meters across but only a few inches deep. Perceptive Pixel, based in New York, released a touch screen today with a diagonal dimension of 82 inches—just under seven feet—but only six inches thick.

"All of the [tablet] and phone manufacturers have settled on projected capacitance as the best way to do multitouch, but it has been really difficult to scale up," says Jeff Han, founder of Perceptive Pixel, a company created to commercialize work on multitouch that Han began when a research scientist at New York University, where he . Projected capacitance involves sensing fingers when they distort the electric field around a transparent layer of electrodes across the surface of a screen. Scaling that up to much larger screens is challenging, because noise from the electronics in a display muddy the signal from a user's touches.

Perceptive Pixel already makes large touch panels; some are used by broadcasters, including CNN, to display data such as weather forecasts or election results. But today these screens are relatively bulky—up to a meter deep. They sense touches using a technique known as frustrated internal reflection. It involves shining infrared light sideways through the glass surface of a display and using a camera behind the screen to track how fingers change the light's path. The camera behind the screen needs to be a certain distance away in order to capture every touch. Perceptive Pixel has sold most of its displays to federal and defense customers that are willing to design or build rooms around the space required for such large displays.

Now the company has found a way to make projected capacitance work in much larger screens. "We developed algorithms for signal processing that can filter out that noise so you can detect the really small changes in capacitance needed to do multitouch," says Han. "We can finally bring projected capacitance to the full-size range." Earlier this year, Han announced a 27-inch screen that made use of this technology; improvements to the technique enabled the new 82-inch panel.

Han says this will allow much larger touch displays to appear in many more places. "This makes it possible for normal companies to use large multitouch displays for everyday work," he says. "They are thin enough to install in any boardroom.

Han expects to see his displays used by architects collaborating interactively on design ideas, or for videoconferencing where people on opposites sides of the country can use touch panels like a white board for long distance brainstorming. "This is really a communication device," says Han.

Perceptive Pixel has also developed software than can be used to manipulate data on its screen in certain common formats. It is also working with large software companies to develop plug-ins so that their products can be used on large multitouch displays.

Jennifer Colegrove, an analyst specializing in emerging display technology at DisplaySearch, says that scaling projected capacitance to such a large display is impressive. The technology is more expensive than other methods of detecting touch, such as infrared, or using cameras, but it should be more accurate, says Colegrove. "Most people claim that you can detect the touches of 10 separate fingers at once," she says, "and it is easier to reject accidental palm touches."

Being able to support multitouch is especially important for very large displays, because it allows several people to collaborate on one display. Perceptive Pixel claims its technology can detect an "unlimited" number of simultaneous touches.

Other companies have scaled up projected capacitance to displays as large as 30 or 50 inches, says Colegrove, but these have only been produced in low volume. "This display from Perceptive Pixel sounds like it could be more suited to situations like boardrooms and other less specialized uses," she says.