Consumers have a right to their genomes

Personal Genomics: Access Denied?

Consumers have a right to their genomes.

By Misha Angrist

Technology Review


In April, a startup company called Navigenics threw a swanky 10-day celebration in lower Manhattan to launch its highly publicized personal-genomics service, which offers genetic risk assessments for 21 complex health conditions--such as heart attack and diabetes--that are partly mediated by multiple genes. (I received complimentary genotyping from Navigenics; it normally costs $2,500.) Unbeknownst to attendees, the New York State Department of Health had sent a warning letter a few days earlier to the company and 22 others that offer similar products, telling them that they needed a permit before they could sell their services. New York-based party goers would be unable to partake in Navigenics' testing.


Read the entire article at Technology Review


More info:

"Letting the Genome Out of the Bottle—Will We Get Our Wish?"
By David J. Hunter, Muin J. Khoury, and Jeffrey M. Drazen
New England Journal of Medicine, January 10, 2008

Privacy on the Web: Is It a Losing Battle?

Article published at Knowledge Wharton

Visit the Amazon.com site to buy a book online and your welcome page will include recommendations for other books you might enjoy, including the latest from your favorite authors, all based on your history of purchases. Most customers appreciate these suggestions, much the way they would recommendations by a local librarian.

But, what if you visited an investment site, only to find advertising messages suggesting therapies for your recently diagnosed heart condition? Chances are that you would experience what Fran Maier calls the "creepiness" factor, a sense that someone has been snooping into a part of your life that should remain private.

Maier is the Executive Director of TrustE, a nonprofit that sets guidelines for online privacy and awards a seal of approval to companies meeting those guidelines. She was a speaker at the recent Supernova conference, an annual technology event in San Francisco organized by Wharton legal studies and business ethics professor Kevin Werbach in collaboration with Wharton.

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Electronic Identity: easy access to public services across the EU

EUROPEAN COMMISSION PRESS RELEASE

Electronic Identity: easy access to public services across the EU

(30 May 2008)Today, the European Commission unveils a pilot project to ensure cross-border recognition of national electronic identity (eID) systems and enable easy access to public services in 13 Member States. Throughout the EU, some 30 million national eID cards are used by citizens to access a variety of public services such as claiming social security and unemployment benefits or filing tax returns. The Commission's project will enable EU citizens to prove their identity and use national electronic identity systems (passwords, ID cards, PIN codes and others) throughout the EU, not just in their home country. The plan is to align and link these systems without replacing existing ones. The project will run for three years and receive EUR 10 million funding from the European Commission and an equal contribution from the participating partners.

See also: Project factsheet : eID

The USA candidates on technology

Technology Review publishs an article about what Hillary Clinton, Barack Obama, and John McCain stand on key technology issues, such as privacy, net neutrality, stem cell research, and biofuels.

Privacy. . .


"At all levels, the privacy protections for ordinary citizens are broken, inadequate and out of date…So we need a new set of consumer protections that boil down to three Basic rights. First, people have the right to know, and to correct, information which is being kept about them. Second, people have the right to know what is happening to their personal information when they are cooperating with a business and to make decisions about how their information is used. And third, in a democracy, people have the right and the obligation to hold their government and the private sector to the highest standards of care with the information they part of a basic privacy bill of rights that has to be adhered to by every commercial information gatherer or marketer.”

Hillary Clinton June 16, 2006, remarks to the American Constitution Society



“The struggle against Islamic fundamentalism is the transcendent foreign-policy challenge of our time. . . Every effort in this struggle and other efforts must be done according to American principles and the rule of law. When companies provide private records of Americans to the government without proper legal subpoena, warrants, or other legal orders, their heart may be in the right place, but their actions undermine our respect for the law”

McCain, January 3, 2008, response to a CNET News questionnaire



“Barack Obama supports restrictions on how information may be used and technology safeguards to verify how the information has actually been used. Obama supports updating surveillance laws ensuring that enforcement investigations and intelligence gathering relating to U.S. citizens are done only under the rule of law. Obama will also work to provide robust protection against misuses of particularly sensitive kinds of information, such as e-health records and location data that do not fit comfortably within sector-specific privacy laws. Obama will increase the Federal Trade Commission’s enforcement budget and will step up international cooperation to track down cyber-criminals so that U.S. law enforcement can better prevent and punish spam, spyware, telemarketing and phishing intrusions into the privacy of American homes ann computers”

Barack Obama website

Social Networking Hits the Genome

Article published at Technology Review by Emily Singer

If you've ever wanted to know just exactly how much DNA you share with your ridiculously tall brother or doppelganger best friend, you'll soon be able to find out. 23andMe, a personal genomics startup in Mountain View, CA, is about to unveil a new social-networking service that allows customers to compare their DNA. The company hopes that the new offering will encourage consumers to get DNA testing, potentially creating a novel research resource in the process.

"I think the idea of social networking has untapped potential," says George Church, a pioneer in genomics at Harvard Medical School in Boston and a member of 23andMe's scientific advisory board. "The idea has precedence in patients like me, people who have been enabled to find one another by their disease. Here, people can find each other by their alleles [or genetic variations]."

Read the full article

Privacy & Social Networks

Video generated by the Office of the Privacy Commissioner of Canada, Jennifer Stoddart. http://www.privcom.gc.ca/

cell phones + adds

As ads arrive on cell phones, privacy concerns grow with targeting opportunities

Article published at Technology Review



NEW YORK (AP) -- Your cell phone is a potential gold mine for marketers: It can reveal where you are, whom you call and even what music you like.

Considering the phone is usually no more than a few feet away, these are powerful clues for figuring out just the right moment to deliver the right coupon for the store just around the corner.

But first marketers will have to wrest the personal profiles from mobile carriers worried that annoyed subscribers might defect to rivals.

''It's proceed with caution,'' said Jarvis Coffin, chief executive of advertising distributor Burst Media Corp. ''Are consumers going to be spooked by the idea that suddenly their phone goes beep and it's a Starbucks offer, and they are standing next to a Starbucks?''

Carriers are now guarding the data zealously, but many people believe it's only a matter of time -- over the next year or two -- before marketers can routinely target ads to a potential customer's location and actions.

Imagine getting pitches for rental cars and hotels the moment you land in San Francisco because an analysis of past calls suggests you tend to take weeklong trips there. Or if day trips to Boston are your thing, you might get an offer for cab service instead.

''My phone has a lot of very specific and detailed information about myself ... information that isn't always going to be resident when I'm at a number of PC browsers,'' said Rob Adler, chief executive for mobile Web company go2 Media Inc.

The research firm eMarketer estimates that U.S. spending in mobile ads, at about $900 million in 2007, will grow more than fivefold to nearly $4.8 billion in 2011. By contrast, paid search and other online spending will only double, to about $42 billion in 2011.

Read the full article at Technology Review

Consumer Data and Privacy in Ubiquitous Computing

Consumer Data and Privacy in Ubiquitous Computing is a Tesis by Teemu Mutanen published by VTT in 2007.

This is the Thesis Abstract

The emergence of ubiquitous computing means new devices, sensors, and protocols throughout society, and thus new sources of consumer data. The new data sources, along with new means of individual identification, constitute a personal privacy concern: what should and should not be done with personal data. The personal-privacy issue is accompanied by corporate privacy when data mining tasks are applied to consumer databases. The ubiquitous-computing environment will provide various data sources, and these databases will be distributed among various agents.


The privacy-preserving perspective on data mining is a relatively young area. The research in this area is mainly theoretical; to the best of our understanding, no real-world applications exist. In this work, we have tried to fill this gap. The current trend in the growing amount of personalization in online services has also created applications for personalized marketing. Personalized marketing services use detailed information about the context and personal history of a customer. This needs sophisticated individual identification methods, which themselves raise privacy concerns. The novelty in privacy-preserving methods is that sensitive and distributed data could be used for data mining tasks while the privacy of individuals is still preserved.


This thesis has two objectives: the first is to use consumer data from distributed sources and study how customer segmentation is possible while preserving privacy. The idea is to conduct the customer segmentation in a way that the data need not leave the agent holding the data. The other objective is the value of the knowledge acquired from collectively conducted segmentation. We believe that collectively conducted segmentation produces knowledge that cannot be acquired otherwise. The results of this work show that privacy-preserving customer segmentation is possible and that collectively conducted segmentation produces new knowledge.

EU data regulator says Internet addresses are personal information

Article published at Technology Review

BRUSSELS, Belgium (AP) -- IP addresses, string of numbers that identify computers on the Internet, should generally be regarded as personal information, the head of the European Union's group of data privacy regulators said Monday.

Germany's data protection commissioner, Peter Scharr, leads the EU group preparing a report on how well the privacy policies of Internet search engines operated by Google Inc., Yahoo Inc., Microsoft Corp. and others comply with EU privacy law.

He told a European Parliament hearing on online data protection that when someone is identified by an IP, or Internet protocol, address ''then it has to be regarded as personal data.''

His view differs from that of Google, which insists an IP address merely identifies the location of a computer, not who the individual user is -- something strictly true but which does not recognize that many people regularly use the same computer terminal and IP address.

Scharr acknowledged that IP addresses for a computer may not always be personal or linked to an individual. For example, some computers in Internet cafes or offices are used by several people.

But these exceptions have not stopped the emergence of a host of ''whois'' Internet sites that apply the general rule that typing in an IP address will generate a name for the person or company linked to it.

Treating IP addresses as personal information would have implications for how search engines record data.

Google led the pack by being the first last year to cut the time it stored search information to 18 months. It also reduced the time limit on the cookies that collect information on how people use the Internet from a default of 30 years to an automatic expiration in two years.

But a privacy advocate at the nonprofit Electronic Privacy Information Center, or EPIC, said it was ''absurd'' for Google to claim that stripping out the last two figures from the stored IP address made the address impossible to identify by making it one of 256 possible configurations.


Full article at Technology Review

Mobility, Data Mining and Privacy - Preserving anonymity in geographically referenced data

First Interdisciplinary Workshop onMobility, Data Mining and PrivacyPreserving anonymity in geographically referenced

Rome, Italy - 14 February 2008

Organized by the European project GeoPKDD Geographic Privacy-aware Knowledge Discovery and Delivery (IST-FET project n. 014915).




The technologies of mobile communications and ubiquitous computing pervade our society, and wireless networks sense the movement of people and vehicles, generating large volumes of mobility data. This is a scenario of great opportunities and risks: on one side, mining this data can produce useful knowledge, supporting sustainable mobility and intelligent transportation systems; on the other side, individual privacy is at risk, as the mobility data contain sensitive personal information. A new multidisciplinary research area is emerging at this crossroads of mobility, data mining, and privacy. In this context, the workshop aims at fostering the interdisciplinary dialogue among researchers and professionals in computer science, law, geography, social sciences, statistics, telecommunication and transportation engineering.

Big Brother Fears Return

Source Text Business Week

Ten Likely Events in 2008

Move over, Nostradamus. When it comes to prognostications, we here at BusinessWeek take a backseat to no one—especially when there's zero money on the line.

BusinessWeek writers and editors put our eggnog-addled minds together and envisaged 10 events we're pretty sure will come to pass in the next 12 months

Big Brother Fears Return

For a decade, a Net-happy world has cheerfully shared personal information online, with relatively little mainstream concern over privacy. Now, the issue may come to the fore, as carriers and cable companies deploy click-tracking software and publicity about China's Olympian Internet oversight leaks into the news.

Happy new year. . . .

www.yourstreet.com : mapping news

Text Source: TechnologyReview by Erica Naone

A new startup called YourStreet is bringing hyper-local information to its users by collecting news stories and placing them on its map-based interface, down to the nearest street corner. While there have been many companies that combine information and maps, YourStreet is novel in its focus on classifying news by location. (See "A New Perspective on the Virtual World.")

When a user opens the site, it detects her location and shows a map of that area, stuck with pins that represent the locations of news stories, user-generated content called conversations, and people who have added themselves to the map. The user can zoom in or out of the map or look at another location by entering a place name or zip code into a search bar. CEO and founder James Nicholson says that what sets YourStreet apart is its extensive news service: the site collects 30,000 to 40,000 articles a day from more than 10,000 RSS feeds, mostly from community newspapers and blogs. "We're not relying on the users to provide us with articles," Nicholson says. The stories featured on the site aren't of a specific type, and users will find the locations of murders marked alongside the locations of upcoming music shows. Stories featured on the site are teasers, and, if a user clicks to read further, she will be directed back to the source of the information.

Read the full article at Technology Review

EDPS Opinion on RFID: major opportunities for Information Society but privacy issues need to be addressed with more ambition

Photo: RFID Tab. Wikipedia

Text source: European Commission Press Release

The European Data Protection Supervisor (EDPS) today issued his Opinion on the Commission's communication on Radio Frequency Identification (RFID) in Europe that was released in March 2007. The Opinion deals with the growing use of RFID chips in consumer products and other new applications affecting individuals.

The EDPS welcomes the Commission's Communication on RFID as it addresses the main issues arising from the deployment of RFID technology while taking account of privacy and data protection considerations. The EDPS agrees with the Commission that it is appropriate in the first phase to leave room for self-regulatory instruments. However, additional legislative measures may be necessary to regulate RFID usage in relation to privacy and data protection.

Peter Hustinx, EDPS, says: "RFID systems could play a key role in the development of the European Information Society but the wide acceptance of RFID technologies should be facilitated by the benefits of consistent data protection safeguards. Self-regulation alone may not be enough to meet the challenge. Legal instruments may therefore be required to guarantee that the technical solutions to minimise the risks for data protection and privacy are in place."

More specifically, the EDPS calls on the Commission to consider the following recommendations:

• the provision of a clear guidance, in close cooperation with relevant stakeholders, on how to apply the current legal framework to the RFID environment;


• the adoption of a Community legislation regulating the main issues of RFID-usage in case the effective implementation of the existing legal framework fails;


• such measures should notably lay down the opt-in principle at the point of sale as a precise and undeniable legal obligation;


• the identification of "Best Available Techniques" which will play a decisive role in the early adoption of the privacy-by-design principle.
  

Brain Sensor for Market Research

Brain Sensor for Market Research

Article published at Technology Review by Kate Greene

Market researchers have long sought people's assessments of not-yet-released advertisements and products. But when people recall how they felt during a commercial, for instance, they often can't accurately describe what their reactions were at each moment in the 30-second spot. Now a San Francisco startup called Emsense claims that it has the tools needed to monitor a person's true reactions during an entire commercial or video game.

The company has developed a sensor-laden headset that tracks brain activity using a single electroencephalography sensor (EEG) at the forehead, and other sensors that monitor breathing rate, head motion, heart rate, blink rate, and skin temperature--all of which can be indicators of whether a person is engaged or excited. In addition, says Hans Lee, chief technology officer at Emsense, his team has built proprietary algorithms that find meaning from the data collected by the sensors. Founded in 2004, the company was originally developed to build an EEG-based video-game controller. (See "Connecting Your Brain to the Game.") Recently, though, the team found that using its technology for market research is more lucrative. And, as the political season ramps up, the company is testing its system internally on campaign ads.

Read the full article at Technology Review

Finding Yourself without GPS

Finding Yourself without GPS

by Kate Greene

Text Source: Technology Review

Google's new technology could enable location-finding services on cell phones that lack GPS.

As more mobile phones tap into the Internet, people increasingly turn to them for location-centric services like getting directions and finding nearby restaurants. While Global Positioning System (GPS) technology provides excellent accuracy, only a fraction of phones have this capability. What's more, GPS coverage is spotty in dense urban environments, and in-phone receivers can be slow and drain a phone's battery.

To sidestep this problem, last week Google added a new feature, called My Location, to its Web-based mapping service. My Location collects information from the nearest cell-phone tower to estimate a person's location within a distance of about 1,000 meters. This resolution is obviously not sufficient for driving directions, but it can be fine for searching for a restaurant or a store. "A common use of Google Maps is to search nearby," says Steve Lee, product manager for Google Maps, who likened the approach to searching for something within an urban zip code, but without knowing that code. "In a new city, you might not know the zip code, or even if you know it, it takes time to enter it and then to zoom in and pan around the map."

Read the full article at Technology Review

Evolving Privacy Concerns

Text Source: Evolving Privacy Concerns by Erica Naone. Technology Review

Facebook user Sean Lane bought a special gift for his wife. But his secret plans were ruined when information about his purchase was published through the social-networking site's new advertising system, Beacon.

Privacy concerns surfaced shortly after Beacon launched a month ago, prompting the activist group MoveOn, for example, to start a Facebook group protesting Beacon and to organize an online petition.

Stories such as this have many users concerned about their privacy. Last week, Facebook founder Mark Zuckerberg issued an apology and released a control that lets users turn off the system. But last weekend, experts at Yale Law School's symposium on reputation economies in cyberspace said that Facebook's privacy woes may not be over.

Beacon works by making use of partnerships that Facebook has formed with other websites, including Blockbuster and the New York Times.

Read the full article at Technology Review

Your Personal Genome

Text source: Technology Review

A new wave of products targeting the blossoming personal-genomics industry has recently become available. The first commercial whole-genome sequencing service was launched last week by startup Knome, based in Cambridge, MA. (See "Get Your Genome Sequenced for $350,000.") Three other companies--deCode Genomics, based in Iceland; and the much-hyped startups 23andMe and Navigenics, both based in California--recently announced consumer services for genome-wide DNA analysis. While the technologies and business strategies of the companies vary, they all aim to give consumers a picture of their genetic risk for disease.

Read the full article at: Technology Review

Take your health data "off the market"

Patient Privacy Rights is launching a Campaign for Prescription Privacy, to introduce to the public perhaps one of the easiest health privacy concepts to grasp. Nearly all of us take a prescription medication at some point in our lives. Nowadays, our drugs are as good as our diagnosis. Most Americans think it is their right to keep information like their drug regimen private. It’s easy to understand why you would want to prevent others from knowing that you take Paxil, Zoloft, Xanax, Viagra, Cialis, birth control, Valtrex, or AZT—just to name a few.


But the reality is you can’t. Even if you pay cash. All 51,000 pharmacies in the U.S. sell your PHI to insurance companies and underwriters, pharmaceutical companies and other dataminers. Arguably, the data can be bought and sold by anyone who wants to purchase it.


Sign the Petition to "Take Your Prescription Data Off the Market!"

Sharing, Privacy and Trust in Our Networked World

Text & Image source: OCLC Website

Founded in 1967, OCLC Online Computer Library Center is a nonprofit, membership, computer library service and research organization dedicated to the public purposes of furthering access to the world's information and reducing information costs. More than 60,000 libraries in 112 countries and territories around the world use OCLC services to locate, acquire, catalog, lend and preserve library materials.

The OCLC has elaborated a report that is based on a survey (by Harris Interactive on behalf of OCLC) of the general public from six countries—Canada, France, Germany, Japan, the United Kingdom and the United States—and of library directors from the U.S. The research provides insights into the values and social-networking habits of library users.

The practice of using a social network to establish and enhance relationships based on some common ground—shared interests, related skills, or a common geographic location—is as old as human societies, but social networking has flourished due to the ease of connecting on the Web. This OCLC membership report explores this web of social participation and cooperation on the Internet and how it may impact the library’s role, including:

- The use of social networking, social media, commercial and library services on the Web
- How and what users and librarians share on the Web and their attitudes toward related privacy issues
- Opinions on privacy online
- Libraries’ current and future roles in social networking

More info:

Social networking was also discussed at the OCLC Symposium “Who’s Watching YOUR Space?” at ALA Midwinter 2007, while property law and privacy rights were discussed at the OCLC Symposium: “Is the Library Open?” at ALA Annual 2007.