Re: Invasion of the Data Snatchers

Bill Keller’s NYTimes op-ed, “Invasion of the Data Snatchers,” is a fantastic piece on the hazy lines surrounding individual privacy in our new “surveillance economy.” Looking critically at The Journal News’ decision to publish the names and addresses of handgun permit holders in two nearby counties, as well as other instances in which people’s personal information is publicly shared, he asks a critical question: “What is the boundary between a public service and an invasion of privacy?” He then goes on to discuss the erosion of privacy and the challenges we face in determining “what information is worth defending and how to defend it.”

As the article says, “You can take your pick of the ways Facebook and Google are monetizing you by serving up your personal profile and browsing habits to advertisers for profit. Some of this feels harmless, or even useful — why shouldn’t my mobile device serve me ads tailored to my interests? But some of it is flat-out creepy. One of the more obnoxious trends is the custom-targeting of that irresistibly vulnerable market, our children.” Keller makes a good point—with so many different entities vying for a piece of your data, how can you know where to begin fighting back? And, it can be so overwhelming to think about the dirty underbelly of data sharing that it’s easier to say it’s no big deal in the long run, especially if you feel like you’re benefiting from it now.

For PPR, the bottom line is this: the erosion of our individual privacy is a critical issue. While some may be quick to dismiss such concerns, we have to remember that what we do now to protect our fundamental right to privacy matters. It matters to us in the present day and it matters to the futures of our children, our grandchildren, and so on…

Yes, there can be great benefits to the unparalleled connectivity and access people have to information in the rapidly shifting landscape of the digital era. At the same time, we have to make sure we establish clear boundaries and give people a say in the ways in which their information is accessed and used, particularly when it comes to sensitive data, like our personal health information. However, as Keller points out, protection of our privacy “doesn’t happen if we don’t demand it.”

This year, PPR will address a similar topic at its 3rd International Summit on the Future of Health Privacy: The Value of Health Data vs. Privacy — How Can the Conflict Be Resolved? We urge you to join us to be a part of the important conversations that will take place as we look at how our health information is valued, who has access to it, and what we can do to protect our privacy in an increasingly connected world.

Facebook setting the standards for Health Care?

No laws forced Facebook to add more consumer control to who sees what — the public did. See story: Facebook privacy revisions ‘sign post’ for healthcare

This is EXACTLY what will happen to the health care system when Americans find out they have NO CONTROL over over who sees, uses, and snoops in their electronic health information.

Patient Privacy Rights’ job is to make sure they learn as fast as possible.

Sign up at www.localhost:8888/pprold for our e-alerts so you can help!

Facebook privacy revisions ‘sign post’ for healthcare

Facebook, the global phenomenon in Web-based social media, rolled out a massive overhaul of its privacy protection policies and technology this week–and in so doing may have drawn up a playbook for healthcare as well, industry experts say.

…”Every single Facebook user in the entire world has to redo their privacy settings,” said Pam Dixon, founder of the World Privacy Forum, a not-for-profit privacy advocacy group based in San Diego. “That’s a big deal. This is a proof of concept that we can in fact have granular control over sensitive data. This gives me great hope that we can tackle the issue of sensitive control of information in healthcare.”

…”Peel said she often hears the argument from people working on healthcare IT standards that it is impossible to build a healthcare IT system that accommodates patient consent, but “PHRs are doing it right now. And now Facebook has access controls, too.”

Groups seek to shield minors’ Web data

Child advocates seek regulatory guidelines to prevent Internet firms from gathering sensitive information.

A coalition of medical groups and child advocates called Friday for guidelines that would prevent Internet companies from tracking the behavior of minors online, contending that many adolescents are divulging more than they realize and aren’t digesting complex privacy policies.

The American Academy of Pediatrics and the American Psychological Assn. were among those asking the Federal Trade Commission to encourage the Internet industry to stop profiling young Web surfers by monitoring the sites they visit and the interests they list on social networks such as MySpace and Facebook.

Just as the government has restricted the amount and nature of television commercials aimed at children, the FTC should step in when interactive ad systems gather sensitive information from minors, the groups said in a filing Friday.

It came amid a flurry of responses to an agency proposal for voluntary guidelines on a burgeoning form of online advertising known as behavioral targeting, a market expected to be worth billions in a few years.

Other nonprofit groups expressed alarm at the rapid consolidation of the largest online ad companies and about Internet service providers beginning to share their vast amounts of data with marketers.

“New ad networks appear to be using . . . traffic data for behavioral advertising without proper safeguards or user consent,” the Center for Democracy and Technology and two other groups wrote. “No regulation or self-regulation exists to address the privacy implications of this new model.”

The medical groups said teens were among the most active Internet users and were the most sought-after by advertisers. But the groups said teens also were the least able to understand how to stop their personal activity from being tracked, used for marketing purposes and sold to others.

Facebook Status: Mark Zuckerberg is Sorry About Beacon

Yesterday, Facebook founder Mark Zuckerberg publicly apologized about the social network’s poorly implemented, privacy-invading Beacon ad program, which broadcast users’ off-Facebook activity in news feeds and caused an ensuing ruckus among geeks and privacy advocates.

From Zuckerberg’s blog post statement:

Facebook has succeeded so far in part because it gives people control over what and how they share information. This is what makes Facebook a good utility, and in order to be a good feature, Beacon also needs to do the same. People need to be able to explicitly choose what they share, and they need to be able to turn Beacon off completely if they don’t want to use it.

This has been the philosophy behind our recent changes. Last week we changed Beacon to be an opt-in system, and today we’re releasing a privacy control to turn off Beacon completely. You can find it here. If you select that you don’t want to share some Beacon actions or if you turn off Beacon, then Facebook won’t store those actions even when partners send them to Facebook.

Facebook has, as of yesterday, allowed users to turn off Beacon entirely, but what’s fascinating about this apology is that the word “advertising” does not appear once in the entire blog post. By framing Beacon just as an information-sharing feature, Zuckerberg is sidestepping one of the most offensive parts of Beacon – that its sole purpose is actually utilizing Facebook’s massive user base to market to each other via what are implied pseudo-recommendations.

{If you love Facebook beacons, you will love the “Wired” Act the Senate is pushing that guarantees we have no control over the use and sale of our personal health records. Facebook users were outraged to find they had no control over information about what they purchased—just imagine how upset they will be when they find out they have no control at all over their sensitive medical records. Due to massive public criticism, Facebooks’ founder decided to stop broadcasting users purchases via the Beacon ad program. Now Mark Zuckerman, Facebook’s founder, is affirming Americans’ longstanding rights to privacy and control over their personal information. Zuckerman said, “Facebook has succeeded so far in part because it gives people control over what and how they share information. This is what makes Facebook a good utility, and in order to be a good feature, Beacon also needs to do the same. People need to be able to explicitly choose what they share, and they need to be able to turn Beacon off completely if they don’t want to use it. ~ Dr. Deborah Peel, Patient Privacy Rights}