Facebook Eases Privacy Rules for Teenagers

Vindu Goel ties all the critical factors together in Facebook’s ongoing decisions that eliminate teens’ privacy on Facebook: the history of social media and children, teen psychology and bullying, the EU’s response, and how exposing teens online is driven by Zuckerberg’s quest for ever greater profits.

To view the full article, please visit: Facebook Eases Privacy Rules for Teenagers

A Family Consents to a Medical Gift, 62 Years Later

Should researchers control the use of everyone’s genomes?

It’s time for a national debate about when and how our genetic information should be used.  The healthcare industry and government are planning that our genomes will soon be part of our electronic health records, so that sensitive data can be used without patient consent. The cost of sequencing a genome will soon drop below $1,000.

But the debate about who should control the use of this unique, personal information must be informed by knowing/tracking the hidden flows of genetic data.

The next phase of theDataMap should track the use, sale, and disclosure of genetic information: from hospitals, labs, and genomic sequencing companies to private biobanks, etc, etc.

We cannot weigh risks vs. benefits of open access to genetic data when the risks are unknown.

An American Quilt of Privacy Laws, Incomplete

The MOST “incomplete” US privacy law is HIPAA, which eliminated Americans’ rights to control the collection, use, disclosure and sale of their health data in 2001.

The new Omnibus Privacy Rule did not fix this disaster. It made things worse by explicitly permitting health data sales for virtually any purpose without patients’ consent or knowledge. These new regulations violate Congress’ intent to ban the sale of health data in the 2009 stimulus bill.

In addition to not being able to control personal health information Americans have no ‘chain of custody’ for their health data, so there is no way to know who is using or selling our health data.

We need a data map to track all the hidden users and sellers of our personal health information, from our DNA, to our diagnoses, to our prescription records:

  • -Watch Professor Sweeney describe the Harvard Data Privacy Lab/Patient Privacy Rights research project to track hidden users of our health data at: http://patientprivacyrights.org/thedatamap/
  • -WE NEED A DATA MAP TO SHOW THE GOVERNMENT IT’S TIME TO FIX THIS PRIVACY DISASTER!

Attend or watch the next health privacy summit June 5-6 in Washington, DC to learn about these urgent health data problems and potential solutions:

Big Data Is Opening Doors, but Maybe Too Many

To view the full article, please visit Big Data Is Opening Doors, but Maybe Too Many.

Steve Lohr likens today’s Big Data issues to the introduction of the mainframe computer in the 1960s. Even then, new technology threatened the “common notions of privacy”.

A few key quotes from the article:

“…the latest leaps in data collection are raising new concern about infringements on privacy — an issue so crucial that it could trump all others and upset the Big Data bandwagon. Dr. Pentland is a champion of the Big Data vision and believes the future will be a data-driven society. Yet the surveillance possibilities of the technology, he acknowledges, could leave George Orwell in the dust.”

“The World Economic Forum published a report late last month that offered one path — one that leans heavily on technology to protect privacy. The report grew out of a series of workshops on privacy held over the last year, sponsored by the forum and attended by government officials and privacy advocates, as well as business executives. The corporate members, more than others, shaped the final document.”

Alan F. Westin, Who Transformed Privacy Debate Before the Web Era, Dies at 83

PPR was deeply saddened by the loss of one of our greatest privacy heroes, Mr. Alan F. Westin, the “father of modern day privacy” and the nation’s most respected academic authority on public attitudes toward health privacy. We are grateful to have had the opportunity to honor him and his tremendous work as one of PPR’s first Louis D. Brandeis Privacy Award recipients in 2012. He truly was a remarkable man whom we will miss dearly, though we know the extraordinary contributions he made to the field of privacy law are everlasting.

Read more about Alan F. Westin here.

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.

Re: Data Privacy, Put to the Test

Great story in the NY Times about the fact that patients’ rights to health privacy are being violated by the sale of prescription records. It quotes three of the big stars who will be speaking June 13th at the First Summit on the Future of Health Privacy: Chris Calabrese, Latanya Sweeney, and Lee Tien. See www.healthprivacysummit.org.

See the full story: Data Privacy, Put to the Test