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.

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

No barriers to free flow of non-personal data in the EU

Gender parity has a huge role to play in the fight to save our oceans

UN investigates systematic sexual violence across South Sudan

‘End the ongoing atrocities’ against people with albinism in Malawi, say UN rights experts

This entrepreneur is helping farmers get food to consumers during lockdown

Get out, stay out: how financial resilience helps end poverty

New UN poverty report reveals ‘vast inequalities’ between countries

Czech PM should resolve his conflict of interest as a matter of urgency say MEPs

Global hunger is on the rise. These simple steps could help eradicate it

The EU checks the multinationals for tax fraud but Britain may sail out of the EU via Panama

New UN Global Climate report ‘another strong wake-up call’ over global warming: Guterres

EU tells Britain stay in as long as you wish

These chefs are fighting hunger and poverty with gastronomy

‘Ticking bomb’ health warning over deteriorating conditions facing Cyclone Idai victims

Yes, together we can make a change! YO!Fest and EYE 2016

Can the EU afford to block China’s business openings to Europe by denying her the ‘market economy status’?

It takes far too long for a rare disease to be diagnosed. Here’s how that can change

How Jack Ma sees a thriving future of entrepreneurship in Africa

How to create a world where healthcare is a right, not a luxury

Food safety: more transparency, better risk prevention

Why the West supports the yen’s devaluation and Japanese over-indebtedness

World in grip of ‘high impact weather’ as US freezes, Australia sizzles, parts of South America deluged

Women in video games: ‘Accept it, or don’t buy the game’

Human Rights Council election: 5 things you need to know about it

Peru should help more young vulnerable people into work

COVID-19: Both WHO and Europe must learn from the current pandemic, say MEPs

Better air pollution data is helping us all breathe easier. Here’s how

Does the “climate change” require ombudsman services for environment?

Digital technology helped create the skills gap. Here’s how it can help close it

Did young people just kill television?

Restoring prospect of peace in Middle East is ‘our shared responsibility’ UN envoy tells Security Council

‘We will not give up on looking for peace for South Sudan’: UN deputy chief

EU-Turkey relations: Erdogan plays the refugee card while beefing up gas operations in the Eastern Mediterranean sea

Is Haiti better prepared for disasters, nine years on from the 2010 earthquake?

Timor-Leste Foreign Minister highlights value of UN in resolving conflicts

This new way of understanding disease is changing medicine

Asia-Pacific showing ‘decisive leadership’ on road to 2030 Sustainable Development Goals, deputy UN chief tells key forum

UN honours peacekeepers who ‘paid the ultimate price’, for the sake of others

FROM THE FIELD: Keeping Morocco’s indigenous culture and conservation in balance

THE COMMITTEES: ‘All roads lead to the Fifth’

‘Building back better’ – here’s how we can navigate the risks we face after COVID-19

Canada leading the way on women’s inclusion and empowerment, says OECD

Facebook: MEPs demand a full audit by EU bodies to assess data protection

Cultural Intelligence: the importance of changing perspectives

Central banking in times of complexity

Here’s how sustainable aviation fuel can take off in Europe

The European Council takes more measures to stem illegal migration

Legendary Harlem Globetrotters slam-dunk at the UN, with message that brings families, nations together

Eastern Partnership: Commission proposes new policy objectives for beyond 2020

ILO and EIB join forces for more and better quality employment

5 things you need to know about water

France-Germany: Divided in Europe, USA united in…Iran

‘Don’t forget Madagascar’s children’, UN appeals for long-term help as emergency worsens

EU Budget 2019: focus on the young, on migration and innovation

Scotland and First Minister Salmond enter the most challenging battlefield for independence: Europe

Take action on air pollution to save lives, and the planet, urges UN chief

‘Pioneering’ former Chilean President Michelle Bachelet officially appointed new UN human rights chief

Parliament ready to fight for a different EU budget

Tuesday’s Daily Brief: prizewinning journalists freed in Myanmar, new tracking tool for suspected terrorists, and a global bid to stop snakebite deaths

UN rights chief slams ‘unconscionable’ US border policy of separating migrant children from parents

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