Oxford professor calls for European ethical codes on patient data; Guardian, 4/12/16

Paul Hill, Guardian; Oxford professor calls for European ethical codes on patient data:

"Prof Luciano Floridi, director of research at Oxford University’s Internet Institute believes the time has come for new European ethical codes to govern “data donation” and its use for medical research.

He says debate in Europe over individual privacy versus societal benefits of shared data has been “swinging like a pendulum between two extremes”. Medical research with big data should be part of the future of Europe, according to Floridi, “not something we need to export to other countries because it is not do-able here”.

“The patient has to be informed and willing to share the information that researchers are collecting – for the benefit of the patient and anyone else affected by the same problems,” said Floridi, who is also chair of the Ethics Advisory Board of the European Medical Information Framework, the largest EU project on the unification of biomedical databases...

Floridi, who has advised Google on the ethics of information and the right to be forgotten, proposes the creation of two new ethical codes.

The first would govern the use and re-use of biomedical data in Europe – an ethical code from the practitioners’ perspective.

The second would relate to “data donation” and the informed choice of an individual to share personal information for research."