By Seyed Amir Ahmad Safavi-Naini In an age where artificial intelligence (AI) is transforming medicine, patient data is more valuable than ever. Open-access initiatives have revolutionized research by fostering collaboration and accelerating innovation. However, they also pose profound ethical challenges, particularly regarding patient consent and the commercialization of data. As we navigate this complex landscape, […]
Category: Data
Smart mouthguards and contact sport: The data ethics dilemma
By Richard B. Gibson & Anna Nelson While concern about the long-term health consequences of head injuries obtained during rugby matches and training is not a new issue, it is one which has been garnering increased attention in recent years. In June 2024, researchers found that retired rugby players who had suffered multiple concussions had […]
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 […]
Should we routinely reinterpret genomic results?
By Gabriel Watts and Ainsley J. Newson. Data obtained from genomic sequencing has an interesting quality. Unlike most other kinds of health results, the stored information remains accurate over time, because it reflects a largely stable property of our bodies: our DNA. Of course, during this time, sequencing methods themselves are likely to have advanced […]
Data for Sale, But Who’s Buying?
By Mackenzie Graham When the history of the Covid-19 pandemic is eventually written, one of the major themes will likely be the important role of ‘big data’. From early discussions about ‘r-rates’, to daily updates on new cases, hospitalisations, and deaths, to consternation about contact tracing apps, and more recently, rates of vaccination, data has […]
Can research participants break from the chain of traditional data sharing consent?
By Vasiliki Rahimzadeh In their recent article, Mann et al. propose to share biomedical research data more widely, securely and efficiently using blockchain technologies. Used to power cryptocurrencies such as Bitcoin, blockchain and the wider group of distributed ledger technologies provide new ways of exchanging data, including sensitive data such as health data, in that […]
Sharing Patient Data for Research – a Matter Of Trust
By Rob Lawrence. Through a unique deliberative process involving public participation, we arrive at some conclusions which initially I found surprising (even counter-intuitive) about how best to foster trust in a large organisation such as the NHS, especially where use of patient data plays a key role in research. Using formal guidelines, ethics committees and […]
Better, faster, safer, sounder; blockchain, bioethics and prosent
By Sebastian Porsdam Mann. Nearly 20 systematic or scoping reviews were published on blockchain pilots in medical contexts in 2019 alone. Our paper is the first to call attention to the need for bioethical analysis of potential blockchain implementations in healthcare and health research. These are urgent questions, since different implementation and design choices can […]