August 26, 2008

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

July 16, 2008

Privacy on the Web: Is It a Losing Battle?

Visit the 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.

May 30, 2008

Electronic Identity: easy access to public services across the EU


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

May 08, 2008

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

March 27, 2008

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

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