Scientific Research: the Italian Data Protection Commissioner Soro to support a very dangerous position about Biobanks

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

Continue reading “Scientific Research: the Italian Data Protection Commissioner Soro to support a very dangerous position about Biobanks”

  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.

GDPR vs CRISPR: the Bureaucracy Against the Science that Saves Human Life

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.

A CRISPR-Cas9 Research and the GDPR. A case-study

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”

Playing God. CRISPR and the re-shaping of fundamental rights

I just came back from Japan where I gave a few lectures on data protection, computer forensics and genetics. I addressed this last topic at Tokyo’s Keio University with a talk titled “Playing God. CRISPR and the re-shaping of fundamental rights“.

This is the agenda (the transcript is coming…):

Agenda 議題

Molecular Biology and Bioinformatics Basics

分子生物学とBioinformaticsの基本

CRISPR – A Step Ahead

CRISPR 一歩先

Law, Science, Religion

法則, 科学, 宗教

Can Life be Owned?

人生を所有することは可能ですか

Copyright: a New Cage

Copyright: 新しい檻

Who Owns (Bio) information

誰が(bio)情報を所有しているか

Genetics, Privacy and Data Protection

遺伝学, 内証, 情報の保護

Freedom of Research

研究の自由

Criminal Investigations and Trials

犯罪捜査と刑事裁判

National DNA Database and Public Policing

警察庁DNA型データベース・システムと政治戦略

Conclusions

終局