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Balance of Privacy and Research

European Union researchers have succeeded in their quest to amend a draft piece of EU legislation that would have impeded the use of personal health data in medical research, ScienceInsider reports.

The original version of the bill sought to standardize privacy rules regarding collecting, storing, and exchanging data across Europe, a move many researchers applauded.

But an amendment added to the bill last March would have required specific consent for the use of personal health data in medical research. That is, ScienceInsider says, researchers would have to re-obtain permission for any new direction their research took, and subjects wouldn't be able to give broad consent, even if they wanted to.

Beth Thompson, a policy adviser at the Wellcome Trust, and other critics argued that such a move would have harmed investments in disease registries, cohort studies, and biobanks, according to ScienceInsider. She and others waged a campaign to modify the legislation to allow research using personal health data, even without explicit consent, if ethical approval was granted and confidentiality safeguards were in place.

As ScienceInsider says, those "efforts paid off" as the newest version of the legislation allows researchers to access health data derived from patients and subjects who've given broad consent.