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Japan to extend privacy laws to protect genetic data

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 >>>

E.U. frees up data for science

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 >>>

Unlocking my genome: Was it worth it?

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 >>>

Tech Companies Are Not Trusted with Health Data

A survey finds that consumers are not eager to give health information to Google, Apple, or Microsoft, but Facebook fared worst of all.

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 >>>

Mass genetic surveillance? Reflecting on bio discrimination, DNA evidence, immigration procedures and privacy

“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 >>>

How secure is privacy in DNA databases?

There are plenty of legitimate reasons people want to protect their genomic privacy, bioethicist George Annas told Tech Insider.

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 >>>

D-N-Ain’t? Genome Sharing Vulnerability Spells Possible Privacy Issues

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 >>>

Toward Protecting Participants’ Privacy

Genomic data shared via the Beacon Project are vulnerable to privacy breaches, scientists show.

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 >>>

Precision Medicine Exposes Patients’ Genetic Information; Sharing And Protecting Data With Google

One of the challenges will be ensuring that the data collected will be harnessed and used for good, without exposing patients to serious breaches of privacy.

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 >>>

Sorry, Obama: Venter has no plans to share genomic data

Craig Venter plans to keep the genomic data gathered at Human Longevity tight to the chest.

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 >>>