Cancer, cloud and privacy shield

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(Originally published in Dell PowerMore)

For more than 10 years, the rapid rise of cloud computing has enabled an even more rapid application of cloud to genomic medicine. In fact, since the U.S. National Institutes of Health (NIH) lifted a 2007 ban on uploading their genomic data into cloud storage, the explosion in cloud use has accelerated. Some of the most impressive accomplishments in this field have included the:

• Pan-Cancer Analysis of Whole Genomes (PCAWG) project, that brings together whole-genome sequencing data from the International Cancer Genome Consortium (ICGC) and The Cancer Genome Atlas (TCGA) projects. This resource describes over 2000 tumor and matched control samples that cover more than 30 cancer entities. Academics will be using the EMBL-EBI Embassy Cloud and high-performance computing centers at the University of Chicago, the Electronics and Telecommunications Research Institute in Seoul, the University of California in Santa Cruz, the University of Tokyo and the Heidelberg Center for Personalized Oncology at the German Cancer Research Centre (DKFZ) (https://news.embl.de/science/1507-genome-cloud/);

• 100,000 Genomes Project in the United Kingdom includes genomic data from 70,000 people including National Health Service patients with a rare disease, plus their families, and patients with cancer;

• Phoenix, Arizona-based Translational Genomics Research Institute (TGen) and the Neuroblastoma and Medulloblastoma Translational Research Consortium on personalized medicine trials which uses high-performance computing in the cloud to sequence tumor samples to create new treatment database that help determine personalized drug therapy approaches for children. The project is also being expanded to pediatric cancer clinical trials in EMEA, starting with sites in France and Lebanon.

“Cloud Powered Genomics” brings with it:

• Speed. The time it takes to process the required 90 billion data points is reduced from 10 days to 6 hours or less

• Precision. The analysis of multiple terabytes of data now enables an ability for doctors to prescribe treatments that are fully matched to the individual patient instead of relying on treatments designed for a broad base of patients.

• Collaboration. Researchers and doctors worldwide can now share diagnostic and case information while drawing on an existing storehouse of massive medical knowledge which, in turn, helps improve outcomes and refines treatment protocols.

• Scalability. Storage and processing capacity grow over time as vast amounts of data are collected.

While cloud computing enables researchers and doctors to cost effectively analyze the enormous amount of data necessary to produce these insights at a rapid rate, the privacy issues raised are also daunting. Last year’snullification of Safe Harbor by the European Courts brings these issues to the forefront.

Even without announcing specific details, the European Commission announced a new framework for governing the flow of data across the Atlantic Ocean. Referred to as “Privacy Shield”, the agreement is meant to be a reflection of the requirements set out by the European Court of Justice in its ruling on 6 October 2015, which declared the old Safe Harbour framework invalid.

“The new arrangement will provide stronger obligations on companies in the U.S. to protect the personal data of Europeans and stronger monitoring and enforcement by the U.S. Department of Commerce and Federal Trade Commission (FTC), including through increased cooperation with European Data Protection Authorities. The new arrangement includes commitments by the U.S. that possibilities under U.S. law for public authorities to access personal data transferred under the new arrangement will be subject to clear conditions, limitations and oversight, preventing generalised access. Europeans will have the possibility to raise any enquiry or complaint in this context with a dedicated new Ombudsperson.”

Specific elements highlighted by the EC include:

• “Strong obligations” and “robust enforcement” on companies that handle Europeans’ personal data

• The U.S. Department of Commerce will monitoring of company published commitments to “Privacy Shield” that make the commitments enforceable under U.S. law by the FTC.

• Applicability to companies that handle human resources data from Europe.

• “Clear safeguards and transparency obligations” on U.S. government agencies’ access to data,

• Written assurances from the United States that access will be subject to “clear limitations, safeguards and oversight mechanisms”.

While the agreement has been lauded by many, its effect on the use of cloud computing on trans-Atlantic genomic research is still questionable. This new development will certainly introduce uncertainty and doubt into the business side of this important and burgeoning industry. We can only hope that any unintended circumstance don’t hinder this important medical progress.

( This post was written as part of the Dell Insight Partners program, which provides news and analysis about the evolving world of tech. Dell sponsored this article, but the opinions are my own and don’t necessarily represent Dell’s positions or strategies.)

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