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 >>>

Are the muddled laws and ethical questions surrounding privacy of genetic data impeding pharma research?

PharmaTimes magazine – April 2017

To gain access to this data, the public may have to be willing to share their own genetic information – but is this something they want?…Read more >>>

Personalized medicine promises much. New initiatives aim to harness technology and genomics to create bespoke medicine, customizing your healthcare like your Facebook profile. Instead of relying on generic practice guidelines, your doctors may one day use these new analytic tools to find the ideal treatment for you.

26 March 2017, Oxford University Press

But this precision has a price that science and medicine don’t acknowledge. Personalized medicine demands that we all contribute our medical histories and genomes to the big data research pool. The science works only if the numbers are very large; so large that some envision every patient as a subject whose medical data will be shared for research. As this future unfolds, you will, of course, be assured of your privacy. Unfortunately, that’s a promise science cannot honestly make and you should not believe….Read more >>>