The Real, Terrifying Reason Why British Authorities Detained David Miranda

“Last Sunday, David Miranda was detained while changing planes at London Heathrow Airport by British authorities for nine hours under a controversial British law — the maximum time allowable without making an arrest. There has been much made of the fact that he’s the partner of Glenn Greenwald, theGuardian reporter whom Edward Snowden trusted with many of his NSA documents and the most prolific reporter of the surveillance abuses disclosed in those documents. There’s less discussion of what I feel was the real reason for Miranda’s detention. He was ferrying documents between Greenwald and Laura Poitras, a filmmaker and his co-reporter on Snowden and his information. These document were on several USB memory sticks he had with him. He had already carried documents from Greenwald in Rio de Janeiro to Poitras in Berlin, and was on his way back with different documents when he was detained.”

To read more, please visit: http://www.theatlantic.com/international/archive/2013/08/the-real-terrifying-reason-why-british-authorities-detained-david-miranda/278952/

 

Privacy Groups Seek To Scuttle Google’s $8.5 Million Data-Leakage Settlement

“Google’s attempt to settle a privacy lawsuit by donating $8.5 million to nonprofit groups and schools should be rejected, advocacy groups argue in a letter to U.S. District Court Judge Edward Davila.”

Read more: http://www.mediapost.com/publications/article/207420/privacy-groups-seek-to-scuttle-googles-85-milli.html#ixzz2eQQGnJNG

How Companies Can Protect Against Leakers

“Ever since Edward Snowden walked out of a National Security Agency facility in May with electronic copies of thousands of classified documents, the finger-pointing has concentrated on government’s security failures. Yet the debacle illustrates the challenge with trusting people in any organization.”

To read more: http://www.bloomberg.com/news/2013-08-21/how-companies-can-protect-against-leakers.html

Health screening penalties ‘harmful’

Article quoting Dr. Peel: “‘This stuff is harmful, not only because its premise of savings is really weak, but concern about the lack of health privacy causes millions of people to avoid early diagnosis and treatment for cancer, depression and STDs every year,’ said Deborah Peel, an Austin-based physician who founded the nonprofit Patient Privacy Rights Foundation and advocates for tighter confidentiality of health data.”
Read more: http://triblive.com/news/adminpage/4556418-74/health-state-programs#ixzz2eQPdUhit
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People Are Changing Their Internet Habits Now That They Know The NSA Is Watching

NSA leaks causing public to mistrust the entire  internet, not just cell phone providers. Quotes:

  • consumer concern about online privacy actually jumped from 48% to 57% between June and July
  • The %  of consumers who adjusted their browser settings and opted out of mobile tracking — jumped 12% and 7% respectively between the first quarter report and July.
  • > 60% of Internet users also reported they do not feel they have control over their personal information online, and 48% said they didn’t know how that information was being used

The lack of personal control over data online will also affect cloud service providers:

  • Cloud-computing industry experts have already estimated that because of the NSA’s surveillance of cloud providers–along with the government’s civil-liberties-trolling methods to get them to comply–more companies will move overseas.
  • ITIF has estimated that this will result in a loss of up to $35 billion for U.S. cloud providers over the next three years, while Forrester analyst James Staten puts the figure at $180 billion.

How will the public react when they find that US health data holders—-such as physicians, hospitals, labs, pharmacies, health data exchanges, insurers, mobile apps, etc, etc— use and sell sensitive personal health data?

To view the full article, please visit:

http://www.fastcoexist.com/3015860/people-are-changing-their-internet-habits-now-that-they-know-the-nsa-is-watching

Unhidden Traits: Genomic Data Privacy Debates Heat Up

“Earlier this year Yaniv Erlich of the Whitehead Institute for Biomedical Research at M.I.T. sent bioethicists into a frenzy when he and his team uncovered the names of people whose anonymous genome profiles were published by the 1000 Genomes Project. Erlich and his co-workersfound the identities entirely by connecting Y-chromosome data and other information from the database with publicly available records, including genealogy databases and lists of people living in particular locales.”

Read more at: http://www.scientificamerican.com/article.cfm?id=unhidden-traits-genomic-data-privacy-debates-heat-up

Enabling the Health Care Locavore

Here’s a great article written by PPR’s Chief Technical Officer, Dr. Adrian Gropper about “why hip replacement surgery costs 5-10 times as much in the US as in Belgium even though it’s the same implant… JAMA publish[ing] research and a superb editorial on the Views of US Physicians About Controlling Health Care Costs and CMS put[ting] out a request for public comment on whether physicians’ Medicare pay should be made public.”

To view the full article, please visit Enabling the Health Care Locavore on The Health Care Blog.

We want to hear from YOU! Tell us why you think health privacy is important.

Protecting health privacy isn’t just important for your own health and well-being, but what we do now affects future generations too. PPR cares deeply about protecting everyone’s privacy so that people are measured by who they are and what they are capable of, not their medical history.

Currently, there are no limits to the types of organizations that can gain access to sensitive information about you—employers, advertisers, insurers, you name it. It’s so important that we act now to preserve our right to privacy and regain control over our personal information. We believe it should always be up to you to decide what happens to your sensitive information—you should be able to know and control who sees it, where it goes, and why.

People say that privacy is a thing of the past in the Digital Age, but we disagree. In fact, we think people are starting to realize just how important privacy is and that it’s a right worth fighting for. That’s why we want to hear from you. Send us a video telling us why you think health privacy matters and join us in our efforts to protect it.*

Watch the video below to hear Dr. Peel talk about why health privacy is important to her (or click here to view it on YouTube).


*Please note that by sending a video, you are giving PPR permission to display the video on its website or social media pages. However, the video remains the sole property of the copyright holder. Any requests to remove or delete videos will be immediately honored.

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.

MUST SEE privacy documentary: “Terms and Conditions May Apply” & interview with Filmmaker Cullen Hoback

Cullen Hoback, director of the documentary  “Terms and Conditions May Apply”, argues Facebook and Google are “public utilities” in an interview, “Is Facebook a Public Utility? Yes, says Filmmaker Cullen Hoback”.

The same argument applies to the US electronic healthcare system—all 300 million Americans are forced touse it, we have no real choices.

The collection and use of the nation’s health data is hidden. There is no full data map tracking all uses and we have no ‘chain of custody’ of our personal health information.

Quotes from the interview:

  • “All data can be tracked and followed.”
  • “You have the companies making a fortune off of our data and you have the government getting something that it’s wanted for a very long time, which is this sort of unprecedented access to all of the information of all of its citizens.”
  • “It’s hard to say opting out is an option.”

See the trailer for “Terms and Conditions May Apply” at  http://www.trackoff.us/