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.


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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]."

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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.

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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.