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

Upcoming Data Protection Regulation to Hampers Genetic and Pharmaceutical Research

The privacy hysteria that since twenty or so years affects policy makers and data protection authorities, reached a new peak with the upcoming data protection regulation whose text has been published last Dec, 18, 2015.

While, thanks God, the text clearly states that “biosample” as such aren’t “personal data”

genetic data should be defined as personal data relating to the genetic characteristics of an individual which have been inherited or acquired as they result from an analysis of a biological sample from the individual in question, in particular by chromosomal, deoxyribonucleic acid (DNA) or ribonucleic acid (RNA) analysis or analysis of any other element enabling equivalent information to be obtained

Nevertheless there is no clear reference to the fact that genetic (and, in general, health-related) researches can’t be pre-emptively limited to specific processing since scientists work with microscopes and not with crystal balls.

The result is that every research project that deals with patient (and patient’s relatives) records might face enormous bureaucratic burdens every time a new path of study emerges from the current one.

Furthermore, the regulation says that:

Member States may maintain or introduce further conditions, including limitations, with regard to the processing of genetic data, biometric data or health data

In other words, then, we will likely face a flood of local regulation that will make harder to perform researches that save human life.

Sure, there will always be the possibility to challenge in court the letter of the law, claiming that no provision can be interpreted in such a way to endanger human life and that data protection, in constitutional terms, is a “lesser right” when compared to the right to health. But this takes time, money and an open-minded court.

In the meantime, scientists will either slow down their activities or risk to be taken in court.

Does it make sense?

Fay, online advertising’s goof and the information overload

In this post I’ve shown what happens when the advertising process slips out of control: a brand is associated to a wrong message because of the lack of attention to every single step of a campaign.

In other times this mistake would have had dire consequences for the advertising agency… accounts fired, campaign suspended and, maybe, public apologies. But today is (in)different.

Who will ever notice – let alone, remember – the misery exploitation associated with this brand (again, unbeknownst by its management)?

Who will take appropriate actions to avoid a similar mistake in the future?

Who cares?

This is one of the consequences of the information overload: be sloppy. After a couple of hours nobody will even remember about it.

Stop Apple and Google To Take Over Our Cars

Google just announced its “Android Auto” platform, while Apple already did  it with Carplay. Both platforms require an Internet connection and, it is just matter of time, will become more and more deeply interconnected with the car control system.

But software do fail. It fails because there’s no such thing as a bug-free software, it fails because people do mistakes, it fails because the software house’s roadmap not necessarily matches the final users’ safety.

And I don’t care about the usual PR stunts such as “as soon as we discovered the bug we did our best to fix it the fastest way” or “since the xyz library is licensed and proprietary we can’t keep responsibility for the way the software behave” or, finally, “if you just read the EULA you will find that it is clearly stated that we don’t take any responsibility for blah, blah, blah…”

This is a price we cannot afford to pay.

DNA Clandestine Collection, Data Protection and Rule of Evidence. Jeopardizing an Homicide Investigation?

After a three years investigation the public prosecutor of Bergamo (a city near Milan) arrested the alleged author of the homicide of a young girl. The suspect has been found thanks to a massive DNA analysis that involved about 18.000 residents of the area, that led, after the skimming of the majority of the genetic profiles, to only two “candidates” .

To obtain the genetic samples to be compared with those found on the crime scene, the investigators faked a routine traffic control check-point, asking the suspect to pass the alcool-test. Further more – as the media say – the investigators were able to collect “organic fluids” from the suspect’s mother unbeknownst to her.

In this way of investigating the homicide there are two issue that haven’t been taken into account so far: what do the investigators do with the 18.000 DNA samples that they’ve collected and, more important, if a “clandestine” DNA sample collection legal under the Italian Rule of Evidence and Data Protection Regulation.

About the first issue: hopefully the “de facto” biobank should be destroyed once no more useful for the investigation, but neither public information is available nor the Data Protection Authority told a word about it. If this is not the case, this 18.000 samples will be used as a comparison for all the future investigation, meaning that those resident who voluntary gave out their samples will be routinely “investigated” unbeknownst to them.

About the second issue: the suspect’s mother has not been charged since there is no evidence of her connection with the crime. So, as a citizen not charged of anything, should have been told by the investigators that they were collecting her genetic sample.

As per the suspect, the available information don’t reveal whether the clandestine genetic sample collection has been ordered BEFORE he was officially charged by the prosecutor or AFTER his official involvement in the case as the potential perpetrator. This might lead to the possibility for the defense lawyer to object the genetic evidence be part of the trial on the basis that both samples have been collected in a wrong way.

Frankly, as this homicide is a major case in Italy, I doubt that neither a judge nor the Data Protection Authority (very aggressive against SPAM and Social Networks misuse)  will “buy” this objection, even if – as I think – has some merit.

So, provided that the defense lawyers follow this path, the trial will take years to end, because of the legal issues involved with the genetic evidence (think of the Kercher murder, that is still re-tried after having gone up to the Supreme Court and back to the Court of appeals) thus allowing a culprit to stay out of jail longer than he deserves, or an innocent to be acquitted much too late.

As somebody said, big cases make bad justice.