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European Biopharmaceutical Review

Is Genetic Anonymity Possible?




If you researched the term ‘genetic revolution’, you would discover that such a revolution began over 40 years ago. In November 1983, The New York Times published an article titled ‘Keeping Up with the Genetic Revolution’ (1). Dr Goad, director of GenBank, shared with The Times his vision that in the future the human full genome – the complete genetic ‘recipe’ for a human being – will be revealed and the implications for human health explained. In 2003, three years after the completion of the first draft of the human genome sequence, Francis Collins, director of the National Institutes of Health and leader of the Human Genome Project, published a short article titled, ‘Genomics: the coming revolution in medicine’, in which Collins explains, “Sequencing the human genome is not an end in itself, it is just the start of a revolution in genomics and genetics that will change the face of medicine in the 21st century” (2).

In 2010, just seven years after final completion of the human genome project, at the cost of approximately $3 billion, Kevin Davies published his book The $1,000 Genome: The Revolution in DNA Sequencing and the New Era of Personalized Medicine. This year, Illumina CEO Francis deSouza considered what the world will look like when full genome sequencing is available for as low as $100 (3). The genetic revolution is not limited to our ability to sequence DNA, but also to writing and rewriting it. Professor Jennifer Doudna, a pioneer of CRISPR-Cas9, explains in a short video how CRISPR, “the biggest revolution in gene editing”, enables geneticists to edit a genome by removing, adding, or altering sections of DNA sequences (4).

However, as more people gain access to their genetic code and are directly involved in consuming genetic services, questions regarding genetic privacy and security become more pertinent and critical. Since genetic data are sensitive, once shared with others, it is highly recommended that it would be fully de-identified and anonymised. As digital genetics evolve and direct-to-consumer (DTC) genetic testing becomes a commodity, hundreds of millions of DNA sequences are expected to be produced and genetic anonymity is becoming more pressing than ever (5).

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Ofer A Lidsky is Co-Founder, CEO, and Chief Techology Officer at Digital DNAtix. Ofer is an experienced entrepreneur in the fields of software development, cybersecurity, and digital health. He developed innovative software and technologies in the VR, neurobiology, genetics, and education fields. Ofer is also an expert in cybersecurity and cloud storage.

Dr Tal Sines is Co-Founder and Chief Scientific Officer at Digital DNAtix, a company that is developing a platform for genetic data management, storage, and analysis, which is blockchain-based. Tal holds a PhD in Molecular Biology from Weizmann Institute of Science, Israel, and is a certified Patent Attorney. He worked for Teva Pharmaceuticals as an IP expert and was IP Director at Hadasit, the technology transfer office of Hadassah hospitals, and at T3, the technology transfer office of the Technion Research Institute.
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Ofer A Lidsky
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Dr Tal Sines
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