New EU Innovative Training Network project “Privacy & Us”

Last week, “Privacy & Us” — an Innovative Training Network (ITN) project funded by the EU’s Marie Skłodowska-Curie actions — held its kick-off meeting in Munich. Hosted in the nice and modern Wisschenschafts Zentrum campus by Uniscon, one of the project partners, principal investigators from seven different countries set out the plan for the next 48 months.

Privacy & Us really stands for “Privacy and Usability” and aims to conduct privacy research and, over the next 3 years, train thirteen Early Stage Researchers (ESRs) — i.e., PhD students — to be able to reason, design, and develop innovative solutions to privacy research challenges, not only from a technical point of view but also from the “human side”.

The project involves nine “beneficiaries”: Karlstads Universitet (Sweden), Goethe Universitaet Frankfurt (Germany), Tel Aviv University (Israel), Unabhängiges Landeszentrum für Datenschutz (Germany), Uniscon (Germany), University College London (UK), USECON (Austria), VASCO Innovation Center (UK), and Wirtschaft Universitat Wien (Austria), as well as seven partner organizations: the Austrian Data Protection Authority (Austria), Preslmayr Rechtsanwälte OG (Austria), Friedrich-Alexander University Erlangen (Germany), University of Bonn (Germany), the Bavarian Data Protection Authority (Germany), EveryWare Technologies (Italy), and Sentor MSS AB (Sweden).

The people behind Privacy & Us project at the kick-off meeting in Munich, December 2015
The people behind Privacy & Us project at the kick-off meeting in Munich, December 2015

The Innovative Training Networks are interdisciplinary and multidisciplinary in nature and promote, by design, a collaborative approach to research training. Funding is extremely competitive, with acceptance rate as low as 6%, and quite generous for the ESRs who often enjoy higher than usual salaries (exact numbers depend on the hosting country), plus 600 EUR/month mobility allowance and 500 EUR/month family allowance.

The students will start in August 2016 and will be trained to face both current and future challenges in the area of privacy and usability, spending a minimum of six months in secondment to another partner organization, and participating in several training and development activities.

Three studentships will be hosted at UCL,  under the supervision of Dr Emiliano De Cristofaro, Prof. Angela Sasse, Prof. Ann Blandford, and Dr Steven Murdoch. Specifically, one project will investigate how to securely and efficiently store genomic data, design and implementing privacy-preserving genomic testing, as well as support user-centered design of secure personal genomic applications. The second project will aim to better understand and support individuals’ decision-making around healthcare data disclosure, weighing up personal and societal costs and benefits of disclosure, and the third (with the VASCO Innovation Centre) will explore techniques for privacy-preserving authentication, namely, extending these to develop and evaluate innovative solutions for secure and usable authentication that respects user privacy.

Continue reading New EU Innovative Training Network project “Privacy & Us”

Sequencing your genome is becoming an affordable reality – but at what personal cost?

Genomics is increasingly hailed by many as the turning point in modern medicine. Advances in technology now mean we’re able to make out the full DNA sequence of an organism and decipher its entire hereditary information, bringing us closer to discovering the causes of particular diseases and disorders and drugs that can be targeted to the individual.

Buzzwords like “whole genome sequencing” and “personalised medicine” are everywhere – but how are they enabling a powerful medical and societal revolution?

It all started in the 1990’s with the Human Genome Project – a very ambitious venture involving 20 international partners and an investment of US$3 billion. In 2003, 13 years after it began, the project yielded the first complete human genome. Today, the cost of sequencing whole genomes is plummeting fast and it is now possible to do the job for less than US$1,000, meaning a whole host of applications both in research and in treatments.

Variants and mutations

Genetic mutations are often linked to disorders, predisposition to diseases and response to treatment. For instance, inherited genetic variants can cause blood disorders such as thalassaemia or others such as cystic fibrosis or sickle cell anaemia.

Genome sequencing is being used today in diagnostic and clinical settings to find rare variants in a patient’s genome, or to sequence cancers’ genomes (to point out genomic differences between solid tumours and develop a more effective therapeutic strategy). It is also possible to test for known simple mutations via a process called genotyping, which can find genetic differences through a set of biomarkers. In the case of thalassemia, for example, there are mutations in the HBB gene on chromosome 11.

A number of drugs, including blood-thinners like warfarin, have already been commercialised with genetic markers (such as a known location on a chromosome) linked to effectiveness and correct dosage.

Continue reading Sequencing your genome is becoming an affordable reality – but at what personal cost?