Patient data for companies: Patient privacy, private profits and the public good

By Adrian Thorogood and Eva Winkler. Our paper tackles a question that policymakers and public healthcare systems are wrestling with around the world: should for-profit companies be given access to medical data derived from patients for research? In public healthcare systems, medical data is generated as part of the routine care of patients, and through […]

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Commercial DNA databases and criminal investigations: Why the customer should not be king

By Nina de Groot In a colorful envelop, tens of millions of people around the world have sent their cheek swabs to a commercial company with the same colors on its facade. By taking a DNA test, they hope to find out about long-lost relatives, their genetic susceptibility for breast cancer, athletic performance capabilities, or […]

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Solidarity, trust and the governance of data sharing during a public health emergency

By Ciara Staunton and Deborah Mascalzoni. The timely access to and sharing of personal data during a public health emergency (PHE) is critical. It is essential for disease surveillance, to inform national and more localised responses, but it is also critical for research into new diagnostics, therapies and vaccines, as well as safety monitoring of […]

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“We think you may be at risk of a genetic disease”. Should direct-to-consumer genetic testing companies contact at-risk relatives?

By Philip E Baker and Jordan A Parsons. Direct-to-consumer (DTC) genetic testing is becoming increasingly popular. However, with genetic testing comes the possibility of discovering mutations that confer increased risk of genetic diseases not only to the tested individual (the proband), but also their genetic relatives. This raises the challenging ethical question of what should […]

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