“The nearly $1 billion electronic health record system at Sutter Health in Northern California crashed early this week, leaving nurses and clinical staff unable to access any patient information for a full day.”
“Five U.S. privacy groups have opposed a proposed $8.5 million settlement with Google in a class action lawsuit over search privacy, as it fails to require Google to change its business practices, they said.”
“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.”
“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.”
“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
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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“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.”
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.”
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.
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.
- See the start of the first US health data map at TheDataMap.org.
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/