A recent amendment to the Italian Data Protection Code (Legislative Decree 196/03) prevents researcher to re-use genetic data in projects different than those the data are collected for. Continue reading “The Italian Data Protection Code To Bash Genetic Research in Italy”
In an interview published by the Italian newspaper “La Stampa” on Oct. 31, 2017 the Italian Data Protection Commissioner Soro stated that:
“If it is true that a profit can be gained from the research on human biological material, is it true – too – that there is no such thing as biobank ownership, but only the right to research the available samples. 1“
- “Se è vero che si possono ottenere profìtti dalle ricerche sul materiale biologico degli esseri umani, è altrettanto vero non esiste la proprietà di una biobanca, ma solo il diritto a fare studi sui campioni disponibili” – English translation by Andrea Monti. ↩
Man Receives First In Vivo Gene-Editing Therapy. This is how The Scientist titles about the news of a man (whose personal data have been made public) affected by Hunter Syndrome that has been treated with a gene-editing technique.
It is much too early to know whether the genetic therapy will work (thus withdrawing the need to pay huge money just to control, and not eliminate, this rare disease). But fact is that scientists did a giant step ahead by treating humans with this method.
Thus it is reasonable to expect that in the very next years many genetic diseases will be finally cured and not just taken under control until the patient dies.
This will happens notwithstanding the GDPR – or, better – notwithstanding the blind madness of the bureaucratic and pedantic interpretation that, in the name of the “protection of fundamental rights” endangers the scientific research and deprive us of the basic right we all deserve to protect: the right to life.
Personal genetic data processing is routinely believed to be subjected to Data Protection Regulations and in particular to the EU General Data Protection Regulation. While this is – in general – true, it is important to know exactly when and until where those regulation can affect the genetic research and – therefore – the possibility to find a cure for genetic diseases. Clearly, an actual life-or-death problem. Continue reading “A CRISPR-Cas9 Research and the GDPR. A case-study”
In the last couple of days, commenting a Linkedin post about Article 29’s (the future European Data Protection Supervisor) opinions, I’ve been involved in an interesting thread that can be summarized as “Authority vs. Legal Interpretation”. Continue reading “Enforcing the GDPR: Authority vs Legal Interpretation”