Data privacy: Should we treat data handling the same way we do our own health?

Increasingly digital breadcrumbs are making it possible for others to track our every move. To illustrate what is at stake here, we need to travel back in time. In the pre-computer era, the ability to remain incognito made for great drama in black and white movies. It also opened the door to the perfect crime, without much risk that the perpetrator  would get caught. Yet, when it comes to crime, invading peoples’ privacy could be justified, some argue, for the sake of the greater good and to preserve a stable society.

But now anybody can become the object of intense online and digital scrutiny, regardless of whether they are guilty of some nefarious crime or not.  And there is distinct possibility that digital natives may, in the not so distant future, take for granted that their every move and decision is being traced without any objection.

It is not clear which is more worrying: that future generations might not even question that they are under constant digital scrutiny. Or that it is our generation that is allowing technology to further develop without the safety nets that could secure our privacy now and for the future; this could leave the next generation without any hope of the privacy we once took for granted.

Health offers an insightful comparison.  It may appear paradoxical, but our society appears much more concerned about preserving our physical health than the health of our digital anonymity. Indeed, new drugs are subjected—rightly so—to a very intense regulatory process before being approved. But new technology and the way inherent data is handled is nowhere near as closely scrutinised. It simply creeps up on us, unchecked.

Despite protests from regulators that existing data privacy laws are sufficient, greater regulatory oversight would invariably impact the way data collection is operated. Take the case of data used for research, for example. Experience has shown that even in countries where transparency is highly valued, such as Denmark, there have been deficiencies in getting consent for the use of sensitive personal health data in research, which recently created uproar. By contrast, the current EU regulatory debate surrounding the new Data Protection Directive has the research community up in arms, for fear that too much data regulation would greatly disrupt the course of research.

As for our digital crumbs, it has therefore become urgent to consider how best this data may be managed, at the dawn of the Internet of Things.  Striking the right balance between finding applications with societal relevance and preserving people’s privacy remains a perilous exercise.

Do you believe digital natives are unlikely to be as concerned about their privacy?

Should we  allow technology to further develop without implementing the necessary privacy safety nets?

Original article published on EuroScientist.com.

GDPR gives citizens control over their own data: An interview with Shawn Jensen

Data protection regulation GDPR, includes exemptions to allow research on anonymised data. In this exclusive interview with Shawn Jensen, CEO of data privacy company Profila, Sabine Louët finds out about the implications of the new GDPR regulations for citizens and for researchers. The regulation was adopted on 27th April 2016 and is due to enter into force on 25th  May 2018. In essence,  it decentralises part of the data protection governance towards data controllers and people in charge of processing the data.

As part of the interview, Jensen explains the exemptions that have been bestowed upon certain activities, such as research, so that scientists can continue to use anonymised data for their work while having to ensure the privacy of the data  required by the law.

In fact, the regulations are designed to preserve the delicate balance between the need to protect the rights of  data subjects in a digitalised and globalised world and yet making it possible to processing of personal data for scientific research, as explained in a recent study by Gauthier Chassang, from the French National Health Research Institute INSERM. The study author concludes:

“While the GDPR adopts new specific provisions to ensure adapted data protection in research, the field remains widely regulated at national level, in particular, regarding the application of research participants’ rights, which some could regret. ”

However, Chassang pursues,

“the GDPR has the merit to set up clearer rules that will positively serve the research practices notably regarding consent, regarding the rules for reusing personal data for another purpose, assessing the risks of data processing …” In addition, he continues, “for the first time, the GDPR refers to the respect of ethical standards as being part of the lawfulness of the processing in research” and “opens new possibilities for going ahead in the structuring of data sharing in scientific research with measures encouraging self-regulation development.”

Read the original article, here…

Podcast: How open science could benefit from blockchain

Experts reflect on the  implications of blockchain for research.

Reporting from the APE2018 a recent conference gathering the who’s who of scholarly publishing in Berlin on 16th and 17th January 2018, EuroScientist Editor, Sabine Louët interviews several experts on their views on how blockchain technology will change the world of scientists.

First, we hear from Lambert Hellerwho is the head of the Open Science Lab at TIB Hannover, the German national library for science and technology,  who gives his perspective as a digital librarian. He gives the bigger picture of how blockchain is going to help science become more open and help remove the current bottlenecks in the scientific endeavour by increasing the connectivity, accessibility and storage of scholarly objects, such as research papers and databases, through metadata and interplanetary data systems

Second, Amsterdam-based Joris van Rossum, director special projects, Digital Science, London, UK, highlights key findings of a recently published report about Blockchain for Research he has written. In particular, he outlines the many aspects of the research endeavour that could benefit from tracking, including through the use of blockchain technology, which can be in the form of data layer underneath the current research ecosystem.

Then, comesBerlin-based, Sönke Bartling,  founder of Blockchain for Science, whose mission is ‘to Open up Science and knowledge creation by means of the blockchain (r)evolution’ speaks about how blockchain could change the way science is being funded via the creation of cryptocurrencies.

Finally, we hear from  Eveline Klumpers, co-founder of Katalysis,  a start-up aiming to redefine the value of online content and focusing on developing blockchain solutions for the publishing industry. Based in Amsterdam, The Netherlands. She gives some concrete examples of how blockchain technology–which can store transparent immutable smart contracts defining how the content should be shared. This approach can give power back to authors of original work and help them monetise it. It could also help ensure reproducibility in research.

Original article published on EuroScientist.com.