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8 July 2015, Nature
Because these services are available through the Internet, and multiple users share hardware, numerous funding agencies have been concerned that their use in genomics could threaten the privacy of people who supply samples. The NIH turnaround is … Read more >>>
Claritas Genomics and Genetic Alliance announced today that they have partnered by coupling Claritas’ genetic testing services with Genetic Alliance’s patient connection platform in order to help patients and families find and participate in rare disease research.
23 June 2015, GenomeWeb
Patrice Milos, Claritas’ president and CEO, said in a statement that adopting PEER will allow the company to “offer patients and caregivers the opportunity to engage in truly patient-centered genomics research,” while still “acknowledging the patient’s preferences regarding privacy, risk/benefit considerations, their timeline, and willingness to share their data.”… Read more >>>
Broad Institute of MIT and Harvard is teaming up with Google Genomics to explore how to break down major technical barriers that increasingly hinder biomedical research by addressing the need for computing infrastructure to store and process enormous datasets, and by creating tools to analyze such data and unravel long-standing mysteries about human health.
23 June 2015, Broad Institute
Broad Institute is a founding host institution of the Global Alliance for Genomics and Health (GA4GH), which was established in 2013 to build a shared framework to enable genomic and clinical data sharing while ensuring data privacy and security as genomic research continues to evolve… Read more >>>
There is a veritable buzz about the potential of whole genome testing. This is partly because the reduction in the cost of sequencing (from many billions of dollars to less than US$1,000) means that the technology can now be used routinely…
22 June 2015, The Conversation
The widespread use of whole genome sequencing will lead to a substantial increase in the prevalence of incidental genetic findings, unexpected results that are unrelated to the reason for a test, but which may be clinically relevant. Incidental genetic findings are especially difficult to deal with because … Read more >>>
The paper reports on participants’ motivations, expectations and concerns recorded via a questionnaire and in-depth interview conducted during their first appointment, and on the data-sharing choices they made during informed consent
8 June 2015, Newswise
Despite their enthusiasm, over half of the participants in the HealthSeq research project had privacy concerns, and only one third consented to having their genomic data shared with the NIH-sponsored Database of Genotypes and Phenotypes (dbGaP)… Read more >>>
What you think about the benefits and risks of whole genome sequencing … we now turn to the final questions of our 100,000 Genomes Project poll, …. to ensure data privacy’; ‘I trust Genomics England’s promise to prevent the use of …
29 May 2015, BioNews
Having asked about perceived benefits, we then asked about perceived risks, with the question, ‘Do you think participating in the 100,000 Genomes Project could affect any of the following?’. We then gave four options: ‘ability to get health insurance’, ‘ability to get life insurance’ and ‘ability to get a mortgage’ (these three options were not mutually exclusive), or alternatively ‘none of the above’… Read more >>>
Seven years ago, Congress prohibited employers and insurers from discriminating against people with genes that increase their risks for costly diseases, but the case that experts believe is the first to go to trial under the law involves something completely different.
29 May 2015, The New York Times
Frustrated supervisors at a warehouse outside Atlanta were trying to figure out who was leaving piles of feces around the facility. They pulled aside two laborers whom they suspected. The men, fearing for their jobs, agreed to have the inside of their mouths swabbed for a genetic analysis that would compare their DNA with that of the feces … Read more >>>
26 May 2015, Stanford Medicine – News Center
Aggregating large quantities of health data could revolutionize physicians’ ability to diagnose and treat diseases, but getting patients and organizations to share that data poses a challenge… Read more >>>
11 May 2015, Nature News
Call it a ‘gut print’. The collective DNA of the microbes that colonize a human body can uniquely identify someone, researchers have found, raising privacy issues … Read more >>>
08 May 2015, Genome Web
Lawrence Brody, director of the National Human Genome Research Institute’s genomics and society division, moderated an Ethical, Legal, and Social Implications (ELSI) panel that looked at everything from the history and uptake of data sharing in genomics to the recently updated genomics data sharing policy from the National Institutes of Health. … Read more >>>