By Charlotte Blease. Every morning you feel like you’re in a dinghy in the middle of the sea. What is causing these horrendous dizzy spells? You turn to the ever-obliging Dr Google which offers a variety of possible causes. After refining your search, you suspect it could be an ear infection rather than something more […]
Category: Privacy
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 […]
Curiosity gone too far: a cautionary tale about snooping
By Wilson Dunlop [Pseudonym]. Just two weeks into my third-year of medical school, I committed a grave sin. I was alone in my room on my laptop, familiarizing myself with the software that powered the electronic health record (EHR). It was like any other night—a mixture of laziness and productivity and needless juggling between my […]
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 […]
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 […]
Illness live: sick children on social media
By Elise Burn. The gap between our ‘real life’ and the life we portray on social media is widening, with many people curating themed social media accounts to promote a certain aspect of themselves. Many social media influencers curate their accounts to contribute towards the development of their brand. It is not unusual for adults […]
“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 […]
Privacy and health data: How can we protect information after it’s been shared?
By T.J. Kasperbauer. We have already lost significant control of our health data. To some, that means we’ve also lost our privacy. But there are many ways of protecting health data even after it has been shared. When health data are widely shared, we must develop strategies for protecting health data regardless of who can […]
Alexa, does this look infected? – We need to talk about safely regulating the digitisation of healthcare, now.
By Catriona McMillan. The sale of health technologies for personal use has boomed in the past few years. At-home access to health information, and the means to track one’s health stats, have been criticised for unnecessarily increasing pressure on NHS services, and in some cases risking user safety. Perhaps surprisingly, however, most of these technologies […]
It is time the law stopped incentivising confidentiality: bringing duties of care more in line with professional guidance
By Michael Fay and Edward Dove ABC v St George’s Healthcare (2017) is an important legal decision, and its return to court in November 2019 will be no less significant for doctors’ duties of care. Currently, a doctor is subject to a duty of care to their patient. A doctor also has a corresponding duty […]