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Baylor Researchers Make Seven Consented Cancer Patients’ Genomic Data Available Open Access

In an open-access pilot project, researchers from Baylor College of Medicine have demonstrated that cancer patients are willing and able to provide “true informed consent” for sharing their genome sequencing data.

1 March 2016, GenomeWeb

They hope that open datasets of “real world” cases will be useful for advancing precision cancer treatment and spur public discussion about protecting patients’ privacy while respecting their autonomy to share data freely to advance science. According to researchers led by Baylor’s Lauren Becnel and Richard Gibbs, the pilot project, in which seven patients agreed to openly share data from sequencing their tumor and matched normal samples, is the first of its kind in the cancer setting…Read more >>>

Warren, Enzi Bill Seeks to Tighten Protections for Genetic Information in Research

Two US Senators introduced a bipartisan legislation this week seeking to tighten protections for volunteers who contribute genetic and other identifiable information for research studies.

7 April 2016, GenomeWeb

The Genetic Research Privacy Protection Act (S.2744), introduced by Senators Elizabeth Warren (D-MA) and Mike Enzi (R-WY) to the Committee on Health, Education, Labor, and Pensions, would ensure that researchers conducting federally funded studies cannot reveal genetic information that can identify individuals who donated their data. Yesterday, during a session of the HELP committee, legislators voted to attach S.2744 as an amendment to Senator Lamar Alexander’s (R-Tenn.) “Advancing Precision Medicine Act of 2016.”…Read more >>>

Understanding the links between privacy and public data sharing

Linking clinical and phenotype variables across data sets will both power precision medicine studies and introduce new privacy risks

25 February 2016, Nature methods

The rapid emergence of cost-effective genomic sequencing is providing unprecedented insight into the genetic variation between individuals. Driven by initiatives in precision medicine, researchers are increasingly focused on understanding the relationships among genetic variations, human disease and clinical outcome…Read more >>>

Sure Genomics wants to sell private genetic profiles for $2,500, but it’s really testing the FDA

Sure Genomics, a startup based in Utah, launched a genetic testing service today that costs a whopping $2,500 upfront, with an additional $150 subscription fee that guarantees DNA analysis updates every six months.

9 February 2016, The Verge

The price is unusually high for a direct-to-consumer genetics company, since 23andMe and Ancestry offer genetics reports for $199 and $99, respectively. But Sure Genomics says it’s worth it; customers who pay the fee will get their entire genome sequenced, and unlike others, the startup says it won’t sell anonymized genetic information to third parties to turn a profit…Read more >>>

The Cancer Moonshot

Can you imagine seeing the face of your unborn child at age 18? Things are moving quickly in the field of genomics.

2 February 2016, Science Magazine

The first article of this column described the coming Practical Genomics Revolution as evidenced by the creation of 11 genomic medicine centres under the auspices of the 100,000 Genomes projects led by Genomics England. Now, the initial results are in. More than 6,000 genomes have been analysed and the project will receive another £250 million in funding in 2016…Read more >>>

Swiss Team Tests Genomic Data Encryption for Clinical Genetic Testing

Researchers in Switzerland have explored the use of encrypted genomic data for computing and reporting clinical genetic test results in order to help protect the privacy of patients.

19 January 2016, GenomeWeb

In a pilot study published online last week in Genetics in Medicine, the team, led by scientists at the École Polytechnique Fédéral de Lausanne and the Swiss Institute of Bioinformatics in Lausanne, tested the implementation of privacy-preserving genetic testing and reporting for 230 HIV-infected patients…Read more >>>

Privacy in the post-genomic era: Impossible

Privacy is a fanciful delusion in the post-genomic era, or so said Christopher Mason during a consumer genomics panel at this week’s J.P. Morgan Healthcare Conference.

14 January 2016, MedCityNews

“I think privacy is going to be really hard to keep, unless you walk around in a hermetically sealed plastic suit,” said Mason, an assistant professor of computational genomics at Weill Cornell Medical College. “You lose cells wherever you walk.”…Read more >>>

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 >>>