Patient privacy preserved in the genomic era
Cracking the human genetic code has increased knowledge on a whole spectrum of genetic diseases and future research is on the road to previously unforeseen therapies. However, unscrupulous use of the information could lead to breach of genetic privacy and leak of sensitive information about its owner. This includes data such as predisposition to sensitive diseases, ancestors, physical attributes and genomic data of relatives. Extending data privacy to the human genome while allowing genetic research Data privacy has been extensively studied in other venues such as internet, finance and trading. However, genetic privacy has unique qualities that could lead to insurance problems with disease predisposition and response to drugs, for example. Moreover, the genetic information reflects ancestry and may also involve family members and their predisposition to disease and therapy response. The EU project GenoPri, funded under the Marie Skłodowska-Curie Individual Fellowships programme, has provided a new system for quantification of the genomic privacy of individuals. “This novel framework will allow individuals to share their genomic-related data consciously, after fully considering the other interdependent peoples’ privacy preferences, for example other family members,” explains Dr Erman Ayday, the research fellow. Of vital importance for continuing genetic research is the sharing of genomic data. GenoPri has also provided a secure and privacy-preserving solution for sharing and utilising genomic data. Meeting of minds on a complex issue Collaboration with key players in a range of relevant arenas was crucial for successful development of the framework. Throughout the project, Dr Ayday interacted with many individuals from a wide range of research areas. Of particular significance, he collaborated with bioinformaticians and medical doctors during different work packages. He also collaborated with lawyers and policymakers through invited talks and meetings. During these interactions, Dr Ayday has raised awareness about the importance of genomic privacy (and privacy of healthcare data in general) among researchers from different disciplines. “The Marie Skłodowska-Curie Individual Fellowships grant provided many valuable opportunities in terms of my training in the early stage of my career and I built up strong international collaborations with other research groups,” Dr Ayday outlines. Attending major conferences in his field such as the Association for Computing Machinery and the Privacy Enhancing Technologies Symposium further strengthened his research network. He also attended a Network and Distributed System Security Symposium conference, gave several international invited talks, and arranged several collaboration meetings. Genomic privacy of the future By developing a new vision for storage and utilisation of genomic data, GenoPri has provided new insights for the academic field through publications, industry collaborations, teaching and public talks. Dissemination a high priority, there are three conference papers as well as papers in seven high-profile journals, including ‘Privacy-preserving genomic testing in the clinic: A model using HIV treatment’ in Genetics in Medicine, and ‘Whole genome sequencing: Revolutionary medicine or privacy nightmare?’ in Computer. There are also three more submitted manuscripts and two preprints. After the success of GenoPri, Dr Ayday is planning to develop larger-scale proposals for both himself and the collaborators he worked with during the project. He also intends to expand the size of his research group and hire a postdoctoral researcher for the management of the group.
Keywords
GenoPri, privacy, research, genomic data, collaboration, genetic information