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The Japanese government has decided to revise the country’s privacy laws in order to clarify protections for personal genetic data, ending ongoing uncertainty around the legal status of genome-based information.
29 December 2015, The Global Legal Post
TOn Friday, an expert panel compiled by the government of Japan decided that the country’s privacy laws ought to treat genome data as personal identification codes, akin to fingerprints or digitized facial feature maps. As such, genetic data will be legally classified as highly sensitive personal information, inaccessible to third parties without an individual’s consent…Read more >>>
Scientists in Europe have won a major battle over access to personal health data. A research coalition had worried that draft E.U. legislation would have sharply restricted scientific use of such data.
19 December 2015, Science Magazine
Three years ago, scientists had embraced the commission’s initial draft of the legislation, which strives to harmonize privacy rules for data collection, storage, and exchange across the continent. But last March, the European Parliament amended the legislation to mandate specific consent for the use of any data in medical research…Read more >>>
One morning in October, I was frantically scrambling around my apartment, trying to find a thumb drive. It’s probably the most valuable thumb drive I’ll ever have, and I couldn’t believe I had misplaced it. It contains the blueprint of who I am: My genome. Or at least, all the ways my genes differ from other people’s.
11 December 2015, CNBC
Our ability to map our own genes will be a bigger and bigger part of our medical care even in just the next decade. President Barack Obama has announced a Precision Medicine Initiative to accelerate what’s possible using this genetic information. And already, gene sequencing is making major impacts on cancer care, diagnostics and drug development.
But it’s still controversial how much genome sequencing is necessary, or even very useful on a personal level. Huge questions loom about cost, privacy and our own abilities to handle this kind of knowledge about ourselves….Read more >>>
16 November 2015, MIT Technology Review
The American public does not trust technology companies with personal health data, according to a survey from Rock Health, a venture capital firm focused on digital health. Venture investors have poured record amounts into health apps, electronic medical records, and wearable devices, including $4.3 billion last year. But Silicon Valley’s touch with consumers hasn’t yet translated into many big successes…Read more >>>
“If we each keep our genetic information secret, then we’re all going to die.” So says Bill Maris, founder, President and CEO of Google Ventures, that $2B investment firm with stakes in more than 280 startups, looking to spend
$425M on anti-aging and life extension this year.
6 November 2015, Genetic Literacy Project
This kind of hype downplays the limits and obstacles to providing reliable genetic information and using it to generate beneficial health impacts. It completely obscures the extent to which research as a system—corporate, academic, governmental, what have you—has been co-opted by private gains and has proceeded with little-to-no accountability to the public good and health…Read more >>>
4 November 2015, Genetic Literacy Project
It’s not just your medical records and genomic data that are personal, he explained — though many would be uncomfortable with sharing that information with acquaintances, coworkers, and employers.
But there are other things too. Genetic data might reveal something unexpected in a family with regard to paternity or adoption, Annas says…Read more >>>
What’s the most valuable piece of data owned by individuals? A look at recent data breaches suggested that financial information is sought by malicious actors to generate short-term gains, while health care information offers long-term opportunity for cybercriminals to wreak havoc.
4 November 2015, Security Intelligence
But here’s the bigger concern: As genome databases grow and access to this data becomes more commonplace, the distance between “unknown” and “maliciously compromised” begins to shrink. For cybercriminals, a bigger attack surface and the trickle-down effect of stored data from first to subcontracted third parties represents the ideal threat vector…Read more >>>
29 October 2015, The Scientist
Anonymous patients whose DNA data is shared via a network of web servers—or beacons—set up by the Global Alliance for Genomics and Health are at risk of being reidentified, according to a report published today (October 29) in The American Journal of Human Genetics…Read more >>>
24 September 2015, Medical Daily
“For these million people who are going to consent to say, ‘I’m going to be among the first in the country to give all of this data to science,’ we have to be very cognizant of this and need to build in lots of privacy protections,” said Dr. Eric Green, director of the Human Genome Research Institute. “We want anybody who’s a qualified researcher access to that data, but at the same time we need to build in appropriate protection so it’s not abused…Read more >>>
22 September 2015, MedCity News
We agree, though, that there are still significant issues that must be addressed in any government-funded and led precision medicine program. Issues surrounding who will have access to the data, privacy and patient medical/genomic records are some of the most pressing … Read more >>>