Quantifying and Protecting the Privacy of Genomic Data

Start Date and End Date

01 April 2016
31 March 2018

Turkish Partner(s)

İhsan Doğramacı Bilkent University

Coordinator

Dr. Erman Ayday

Budget

157,845 Euro

Programme

Horizon 2020 Marie-Curie

Project Web Page

Scientific Outputs

 This project will be a significant step towards understanding the privacy risks on genomic data of individuals and protecting the privacy of genomic data. It will also provide a new vision for security and privacy of health-related data in general and will find many implications in other domains such as banking and online social networks. The results of the project will also have an impact on future policies and legislation about protection of health-related data. 

Tackling ‘grand’ or societal challenges

Algorithms and techniques that will be developed throughout this project will also have applications to security and privacy problems in other domains. Many countries in Europe are currently motivating their researchers to come up with solutions to securely store and manage health-related data. This project will provide a new vision for protection of healthcare data, and hence motivate other research groups to invest more into this line of research.

Industrial Innovation (including innovation in services as well as products and processes)

The outcomes of this project will increase competitiveness in Europe in the field of data security and privacy. The outcomes will also be relevant to the lives of citizens of the ERA by accelerating the pace of genomic research, and hence resulting discoveries and advances in new therapies.  By knowing that privacy of their genomic data will be guaranteed, individuals will be more open to being cooperative in genomic research by donating their genomes. Similarly, using the techniques that will be developed, getting detailed consent from individuals for every research activity will also be not necessary. Furthermore, the proposed project will be the first step towards holistic privacy for health-related data in general. 

Research-influenced changes in policy, agenda-setting

Overall, the results of this project will provide a new vision for the storage and utilization of genomic and other health-related data. They may also lead to development of new legislation, regulations, and policies for storage and handling of genomic data. By providing provable security and privacy for genomic data, the outcome of this project will also boost genomic research by motivating individuals to consciously donate their genomic-related data for research without having to worry about their genomic privacy.

The provision of Improved Public Goods

Dr. Ayday will share results with researchers from other disciplines (e.g., law, medicine, policy making) to get their opinion and inform them about such solutions. By doing so, for example, policy makers or lawmakers may take these results into account for future policies or legislation. Dr. Ayday will also contact hospitals and bioinformatics companies about the project results, and hence he will make sure that proposed solutions reach to the end-users.

The improved exercise of professional skill

Dr. Ayday also plans to collaborate with the industry, especially with hospitals, e-government service providers, and medical research laboratories, for the deployment of the techniques that will be developed in this project. He already has such experiences with the University Hospital of Lausanne (CHUV), Lausanne Biobank, and Sophia Genetics (a clinical genomics company). Such partnerships will open up new academia-industry collaborations for the host and provide job opportunities for the graduate students.

Human capital development

Dr. Ayday will introduce new teaching programmes for both undergraduate and graduate students, and hence the host organization will start graduating trained students and experts on security and privacy. The project will also provide new research directions for several undergraduate and graduate students.

 

Students (via working on different parts of the project or via the results of the project), general public (by becoming more privacy-aware), other faculty members and other researchers (that Dr. Ayday will collaborate with), the field of security and privacy, and genomic research will benefit from the resultsa