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Can we have medical privacy, cloud computing and genomics all at the same time?

Presented by: 
Ross Anderson University of Cambridge
Thursday 8th December 2016 -
13:30 to 14:15
INI Seminar Room 1
"The collection, linking and use of data in biomedical research and health care: ethical issues" is a report from the Nuffield Bioethics Council, published last year. It took over a year to write. Our working group came from the medical profession, academics, insurers and drug companies. As the information we gave to our doctors in private to help them treat us is now collected and treated as an industrial raw material, there has been scandal after scandal. From failures of anonymisation through unethical sales to the catastrophe, things just seem to get worse. Where is it all going, and what must a medical data user do to behave ethically?

We put forward four principles. First, respect persons; do not treat their confidential data like were coal or bauxite. Second, respect established human-rights and data-protection law, rather than trying to find ways round it. Third, consult people who’ll be affected or who have morally relevant interests. And fourth, tell them what you’ve done – including errors and security breaches.

Since medicine is the canary in the mine, we hope that the privacy lessons can be of value elsewhere – from consumer data to law enforcement and human rights.

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University of Cambridge Research Councils UK
    Clay Mathematics Institute London Mathematical Society NM Rothschild and Sons