Decision time for new EU rules on how researchers use personal data

It’s a key time for research across the EU.

For the last four years, an important European data law has been batted back and forth between different parts of the EU policy process. And now those talks are reaching the final stages – and we need your help.

We’ve written about the law – called the EU Data Protection Regulation – before. And we’ve also raised concerns about how early versions of the law – if put into practice – would leave life-saving research under threat.

So now, more than ever, we’re keen to make sure EU policymakers hear our concerns.

That’s why we, alongside several leading patient and research organisations across Europe, sent this letter to The Times, highlighting the issue to policymakers in Brussels (a word of warning – it’s behind a pay wall).

And it’s also why we’ve launched a new petition on our collaborative campaign site (sign it here), so you can join us in making sure these important concerns are heard in Europe.

What’s the big deal?

If you haven’t been following the draft law since the start, it’s worth recapping. The Data Protection Regulation looks at how personal data is used across a number of sectors, from telecoms through to medical research.

And we support what the law is trying to achieve – safe, secure and responsible use of personal data.

Research happens across countries and continents, and it’s collaborative, so harmonising the rules across Europe makes a lot of sense.

But the way the law has developed has been worrying.

At first everything was fine. The original proposal accommodated the needs of researchers, and offered an exemption from the need to ask for consent every time researchers use personal data in their work. You can read more on why this is so important on the campaign website.

The trouble began when the European Parliament proposed changes to the draft version of the law. They wanted changes to the consent agreement, which would require researchers to seek consent each time they use personal data. This would cause a real problem for how important research studies are run (particularly, for example, when reusing data from previous studies), raising costs and even undermining the findings in some cases.

Crucially, the European Parliament’s changes don’t take into account the important and effective safeguards that are already in place for handling research data. Ethics committees and robust contractual agreements already ensure people’s personal information is kept safe.

Thankfully, a second tier of EU approval, made up of representatives of national governments (called the Council of Ministers), shared these concerns. And they agreed with the original approach, which we blogged about at the time.

What’s happening now?

Now the three EU institutions involved in approving new laws have agreed their respective positions, it’s time to thrash out a compromise. As you read this, representatives from the three bodies (the European Commission, the European Parliament and the Council of Ministers) are sitting at a table in Brussels crafting the final version of the law.

And it’s vital they get it right. Personal data is the lifeblood of research, and absolutely at the heart of our progress on beating cancer. Thanks to such data, researchers have already been able to uncover how some cancers develop and ways to prevent this. The link between smoking and lung cancer, for instance, was made possible by personal data use in research.

That’s why it’s important that the final text of the law stays on track. In other words the law needs to allow researchers to continue using personal data as they do today.