Cancer research put at risk by General Data Protection Regulation? The possible dangers of a data privacy EU mania

Embrace between Viviane Reding,  Commissioner responsible for Justice, on the right, and Neelie Kroes, Commissioner  in charge of Digital Agenda (EC Audiovisual Services, 1/07/2014)

Embrace between Viviane Reding, Commissioner responsible for Justice, on the right, and Neelie Kroes, Commissioner in charge of Digital Agenda (EC Audiovisual Services, 1/07/2014)

One of the most important debate topics of the last months in the EU has been data privacy and data protection regulation. Whether it was for a major trade agreement proposal or for the biggest search engine of the world, it makes no difference since all data privacy stakeholders have been always kept busy. Having remained basically static for about two decades, data protection laws in Europe are on the verge of a big, soon-to-be-made review.

“Rapid technological developments and globalization have brought new challenges for the protection of personal data”, the European Parliament states through the official Draft Report of the General Data Protection Regulation (Recital 5), highlighting where lies the question that triggered the “revolution”. “Technology allows both private companies and public authorities to make use of personal data on an unprecedented scale in order to pursue their activities. […] Technology has transformed both the economy and social life, and requires improved legal safeguards which will facilitate the free flow of data within the European Union and the transfer to third countries and international organisations, ensuring a high level of the protection of personal data”.

And if this is the European Union’s mission, I think that only just a few could moan about, or not agree with the above. So where is really the debate? Well, everything runs smoothly until the ‘renovation’ knocks the door of a bigger “house”: health. Or – to be precise – research.

Did you see this coming? Researchers around Europe are concerned that a regulation meant to protect cancer patients’ privacy may actually inhibit future progress in cancer research. The proposed EU General Data Protection Regulation specifically states that “explicit and specific patient consent” is needed for researchers to use their data or tissue samples. So, basically, researchers would have to approach patients every single time they need to consult their case or to add their tissue samples to a database, something that many scientists say would “put a halt to many public health research efforts.”

The last comment was part of a bigger statement published on July 25th by ESMO, the European Society for Medical Oncology, leading pan-European association representing medical oncology professionals, which has been so far the most fanatic opponent of the proposed regulation. “Hope for patients facing a life-threatening disease like cancer is based on advances in research,” said Kathy Oliver, Chair of the International Brain Tumour Alliance, through ESMO’s webpage. “And research progress requires access to a wide pool of patient data, even from patients who have since passed away and can no longer provide consent to allow for research that could save lives in the future”.

There’s also space for a proposal, within ESMO’s statement, which gathered the enthusiasms of many scientists and researchers of the continent. ESMO proposes that the text of the EU General Data Protection Regulation includes a ‘one-time consent’ for research, ensuring patients are aware of what they are consenting to, given the possibility to withdraw their consent at any time. “Our proposal achieves the correct balance between the right to privacy and the right to health”, said ESMO President Rolf A. Stahel. “It actually ‘empowers’ patients, allowing them to choose whether to donate their data and tissue for public health research, which has the ultimate goal of finding cures”.

President Stahel addressed the core of the question, I think: “the correct balance between the right to privacy and the right to health”. I recently said that finding the right balance in things is some kind of art and I’m also convinced that “balance” should always sound like “equilibrium”.

What I’m afraid of though is that there might be some kind of data-protection ‘mania’ in the EU recently, which is taking us a bit to the extremes, a bit beyond the scope that was foreseen. People’s privacy protection is something sacred, a value that must be protected and monitored with care, but I believe that handling the matter by considering privacy as the main pillar of the Union could be dangerous. A “privacy-protection-always-wins”-way does not exactly sound like “equilibrium”, I guess.

A brief consideration, as a conclusion: the economic crisis of the past few years has led to deep cuts in funding for scientific research in many European countries, especially in the South. In many areas researchers spend huge amounts of time and energy every day waiting for funds to be unlocked, or simply for approvals to come before they can start with their main activity. This takes the overall European research sector to a general condition of need to be more “fluid” in order to be competitive, and, most of all useful, to the European society and citizens. If research is one of the pillars of this Union – as I am definitely sure it is – then it’s easy to understand that removing obstacles as much as possible threats often sounds like making the difference.

The general consensus at the moment is that the final version of the Regulation will be adopted sometime in 2015 and come into force in 2017. The question remains, however, who is the man that is able to define the exact distance per millimeter between the two extremes in data protection? Who is able define the golden section weighing all the factors that compromise data privacy and research?

The debate will go on and so will the attention of the Sting in this major issue for the European citizen.

Advertising

the sting Milestone

Featured Stings

Can we feed everyone without unleashing disaster? Read on

These campaigners want to give a quarter of the UK back to nature

How to build a more resilient and inclusive global system

Stopping antimicrobial resistance would cost just USD 2 per person a year

Brexit: reciprocal visa-free access for EU and UK nationals

Syria still suffering ‘staggering levels’ of humanitarian need, Security Council hears

Eurasian Union begins: the giant modelled on the EU is Moscow’s biggest challenge

An EU Summit without purpose

Six steps that can help us to tackle homelessness

The space internet race is dawning. Here’s what to expect

Worldwide UN family celebrates enduring universal values of human rights

Philanthropy is at a turning point. Here are 6 ways it could go

Violence in North and West Africa increasingly targeting civilian and border areas – OECD/SWAC

The European Parliament x-rays the troika’s doings

7 ways business can be agents for peace

Newly licensed vaccine, ‘milestone in the fight’ against Ebola in Africa, UN health agency

Main results of EU-Japan summit which took place on 25/04/2019 in Brussels

Managers’ pay under fire

Our food system is pushing nature to the brink. Here’s what we need to do

UN ‘comes together in sadness and solidarity’ to honour staff who died on board Ethiopian Airlines flight

New EU short-stay visas: more advantages for legitimate travellers

The Parliament sets the way for the European Banking Union

Q and A: This is how stakeholder capitalism can help heal the planet

Who is first (and last) in the race to build a workforce fit for the future?

Advanced economies still have plenty of work to do to reach Sustainable Development Goals

Not faith, ‘but those who manipulate the faithful’ driving wedge between religions, UN-backed forum in Baku told

‘Stay together and step up’ action to meet Global Goals, ECOSOC President tells development forum

EU Trade Ministers come together in a desperate attempt to save TTIP

People are scared of artificial intelligence – here’s why we should embrace it instead

The EU Parliament blasts the Council about the tax dealings of the wealthy

Refugee crisis update: Commission still in panic while Turkey is to be added in the equation

Climate change and health: a much needed multidisciplinary approach

EU-US trade deal: Europe to Americanize its social model?

Merkel had it her way with the refugees & immigrants but can Greece and Turkey deliver?

‘Global trust’ declining, ‘our world needs stepped-up global leadership’

Progress made at COP25, despite lack of agreement to increase climate ambition

UN food relief agency airlifts aid to DR Congo province hit by Ebola outbreak

Snowden is the “EU nomination” for this year’s Oscars

Why the Fourth Industrial Revolution needs more arts graduates

Commission reports on progress made by Albania and North Macedonia

In the future, no one should be excluded from healthcare

What makes Copenhagen the world’s most bike-friendly city?

Rohingya refugee shelters ‘washed away’ in Bangladesh monsoon rains: UN agency

Zhua Zhou: Choosing The Future

ECB doesn’t dare touch Eurozone’s big banks

These tech start-ups are changing what it means to farm

Human trafficking, slavery reports and health of migrants in Libya

How smartphones can close the global skills gap for billions

This entrepreneur is helping farmers get food to consumers during lockdown

Can the next financial crisis be avoided?

Record-breaking heatwaves killed about 1,500 people in France

With potential to boost profits by up to 20 per cent, a woman’s place is at work, says UN labour agency

Could Europe become the first climate-neutral continent?

EU-Belarus: MEPs back agreements on readmission and visa facilitation

Rights of ‘gilets jaunes’ protesters in France, ‘disproportionately curtailed’, say UN independent experts

We must stop choking the ocean with plastic waste. Here’s how

FROM THE FIELD: One teen’s journey from refugee camp to US school principal

Britain’s May won the first round on the Brexit agreement with the EU

What cryptocurrencies will do to the integrity of politics

Who is to pay for Trump’s trade war against China?

UN chief ‘deeply saddened’ by Ethiopia plane crash which killed 157, including at least 21 UN workers

EU-US Privacy Shield data exchange deal: US must comply by 1 September, say MEPs

Declaring commitment to ‘peace and stability’ for Libya, top UN envoy steps down as stress takes its toll

US cities are going to keep getting hotter

More Stings?

Advertising

Speak your Mind Here

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s