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 […]
Category: Privacy
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 […]
Privacy: Don’t Get Over It
By Elias Aboujaoude Account hacks. Revenge porn. Identity theft. Cyberstalking. Psychographic targeting. Facial recognition. Government surveillance. It’s enough to give up and agree with the devastatingly prescient remark from 1999 by the founder of Sun Microsystems: “You have zero privacy anyway. Get over it.” In a post-privacy world, victims of technology-enabled privacy violations look to […]