“It’s basically like you have no privacy, they’re taking it all,” said Joel Winston, a consumer protection lawyer. “When it comes to DNA tests, don’t assume you have any rights.”

18 October 2017, Gizmodo

You probably wouldn’t hand out your social security number without having a pretty good idea of how that information was going to be used, right… Read more >>>

Your DNA contains a lot of personal information. Simply speaking, genome is the code that runs in nucleus of almost every cell in your body. This extremely sensitive information has great potential for better healthcare and understanding of human nature. But, for sure, being careless about privacy is playing with fire when it comes to DNA.

23 October 2017, The Merkle

Here is the real-world example. Let’s suppose you have had a genetic testing for any reason last year. Today your insurance company refused… Read more >>>

The Global Alliance for Genomics and Health (GA4GH) this week unveiled its strategic plan for the next five years. Called GA4GH Connect, it calls on the alliance’s 500-plus members to develop new data sharing standards for use in major international genomic data initiatives.

17 October 2017, Genome Web

GA4GH has already agreed to work with 13 initiatives, including Genomics England and Australian Genomics, which it calls driver projects, to develop and release new standards for genomic data discovery… Read more >>>

Genetic tests and genome sequencing are generating terabytes of sensitive private data. How can they be kept safe?

28 September 2017, Protomag (Massachusetts General Hospital)

Ronald Cohn pediatrician-in-chief of The Hospital for Sick Children in Toronto, tells the story of a young patient who was brought to him with a connective tissue disorder. The logical next step was a genetic test… Read more >>>

Genomics company Human Longevity Inc. (HLI) made a study on predicting a person’s face and other qualities based on genetic information. HLI says that face-prediction technologies could pose risks to a person’s privacy and that stricter guidelines for genome databases must be established. Since the study’s release, many experts have voiced their opinions, with some saying that privacy risks floated by HLI are overblown.

23 Septembre 2017, Wall Street Pit

Many of the promising applications of genome sequencing lie in associating genotypes (the unique genome set of a person) with physical… Read more >>>

Kimberly White/Getty Images for Vanity Fair

Is it safe to give your genetic data to 23andMe? CEO Anne Wojcicki explains the DNA testing company’s privacy protections on the latest Too Embarrassed to Ask.

22 Septembre 2017, Recode

23andMe has been around for more than 11 years, but it’s just now getting to “critical mass,” CEO Anne Wojcicki says, thanks in part to a recent $200 million funding… Read more >>>

Stanford researchers used cryptography to cloak irrelevant genetic information in individuals’ genomes while revealing disease-associated mutations. They say the technique could vastly improve patient privacy.

17 August 2017, Stanford Medicine News Center

It is now possible to scour complete human genomes for the presence of disease-associated genes without revealing any genetic… Read more >>>

Many websites offering genetic testing for commercial purposes fail to outline the privacy implications of such tests, Data Protection CommissionerHelen Dixon has said.

22 June 2017, The Irish Times

Speaking at the inaugural Data Summit in Dublin organised by the Department of the Taoiseach, Ms Dixon outlined the challenges to privacy from the so-called digital revolution, but also the opportunities… Read more >>>

The BabySeq Project is the first-of-its-kind clinical trial focused on how best to integrate genome sequencing into the care of newborns.

6 June 2017, Huffington Post

“One family asked me: ‘Will they be able to clone my baby?’”
That’s not a typical question, says genetic counselor Shawn Fayer, just an anecdote. Still, it fits a theme. For parents considering whether to have their newborn’s genome sequenced as part of the BabySeq Project, genetic privacy and discrimination… Read more >>>

In the United States in 2015, the number one target for cyber-attackers was health data. While that number is shrinking thanks to efforts by the security and privacy research community, health data are still a very common target of cyber-attacks.

7 April 2017, GA4GH News

In a paper recently published in the Journal of the American Medical Information Association, Baker and a team of GA4GH volunteers led by genomics security expert Jean-Pierre Hubaux put forth three new strategies for mitigating the risks of cyber attacks on Beacon datasets….Read more >>>