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.

Social Networking – How to avoid a digital hangover

Source Text: ENISA Web Site

ENISA is launching its first Position Paper on Security Issues and Recommendations for Online Social Networks at the echallenges conference in the Hague, 25 Oct. Social Networking is like a ‘digital cocktail party’: a powerful mixture of human social instincts and web 2.0 technology which is revolutionising the Internet. ENISA emphasises the many benefits of Social Networking but identifies 15 important threats. This leads to 19 recommendations on how Social Networking can be made safer.

ENISA’s Position Paper emphasises the commercial and social benefits of a safe and well-informed use of Social Networking Sites (SNS). “Safer Social Networking is ‘win-win’ for all: both users and SNS providers” says the Executive Director of ENISA, Mr Andrea Pirotti.

Several SNS are now among the top 10 most visited websites globally. The commercial success of the multi-billion Euro SNS industry depends heavily on the number of users it attracts. Combined with the strong human desire to connect, this encourages design and online behaviour where security and privacy are not always the first priority.

Users are often not aware of the size or nature of the audiences accessing their information and the sense of intimacy created by being among digital friends often leads to a ‘digital hangover’ – disclosures and digital “memories” that cannot be forgotten the morning after.

For full list of threats and recommendations, please refer to the Position Paper http://www.enisa.europa.eu/doc/pdf/deliverables/enisa_pp_social_networks.pdf

Privacy in Japan

Networked Information Processing and Changing Attitudes to Privacy in Japan

Thursday 14 February 2008 15:30 - 17:00

Dr Andrew A. Adams, School of Systems Engineering, The University of Reading

Location: Oxford Internet Institute, 1 St Giles, Oxford, OX1 3JS. This event is open to the public. If you would like to attend please email your name and affiliation, if any, to: events@oii.ox.ac.uk

Dr Adams has just spent nine months visiting Meiji University in Tokyo, funded by a Global Research Award from the Royal Academy of Engineering. He has been studying the legal and social approach to privacy of electronic data in Japan and will present some of the results of his study.

There is a myth amongst researchers that there is no such thing as 'Privacy' in Japan. Dr Adams refutes that and shows that the advent of networked information processing of personal data has brought Japanese attitudes to information privacy to a highly similar position to Western attitudes.

Grounded in the social and psychological literature about Japan, this work explains the emergence of Japanese legal protection for personal data in recent years.