Will data protection legislation harm science?
In 2012 the European Commission drafted comprehensive reforms to the European Union's data protection rules to, it said, "strengthen online privacy rights and boost Europe's digital economy".
Recently the European Parliament's civil liberties, justice and home affairs - or LIBE - committee proposed amendments to the 2012 commission proposals that planned to change the EU's Data Protection Directive (95/46/EC).
The EUA statement stresses that some of the committee's changes, and notably proposed amendments to articles 42, 81 and 83, impose "restrictions that may unintentionally threaten scientific advancements in a number of areas".
In March this year the EUA joined more than 60 individual and group signatories, collected on the Wellcome Trust website, to a joint statement saying that: "Health and scientific research will be severely threatened if the amendments to Articles 81 and 83 of the Data Protection Regulation adopted by the LIBE committee of the European Parliament are taken forward.
"If implemented, the amendments would make much research involving personal data at worst illegal, and at best unworkable," they stated.
In an 18-page memo the signatories presented detailed proposals for changes in the wording of the directive.
The EUA in its statement late last month said that "in the fields of individualised medicine and personalised preventive medicine the effectiveness of essential tools could be severely compromised.
"The precise legal impact of the proposed amendments for scientific research across Europe is still uncertain, but the unintended consequence might be quite dramatic. Hence, the EUA urges the ministers to adopt the original European Commission proposal."
But in March the European Parliament issued a press release stating: "Progress on EU data protection reform is now irreversible following the European Parliament vote."
Further, the plenary vote "means that the position of the parliament is now set in stone and will not change even if the composition of the parliament changes following the European elections in May".
The directive will now follow a so-called 'co-decision procedure' and will be adopted by the Council of Ministers in consultation with the European Parliament. This might be difficult, since the approaches of the two bodies are conflicting - at least among present legislators.
And not all academics agree, either. In 2013 several German academics published a statement in Die Zeit arguing that innovation and competition in Europe would not be threatened by the data protection rules.
"We believe the principle of explicit informed consent is indispensable," they argued - and their position was later signed by more than 100 academics from across Europe. This might have influenced the LIBE committee's final position.
The European Parliament's position on restricted access to personalised data, including for scientific purposes, might be further strengthened by the European Court of Justice ruling invalidating the Data Retention Directive.