Karin Jongsma is an assistant professor of medical ethics at the Julius Center of Utrecht University Medical Center, the Netherlands and a Post-doctoral fellow at the department of Medical Ethics and History of Medicine in Göttingen, Germany. She was also our Caroline Miles visiting scholar in November 2017.
She works with Prof. Dr. Annelien Bredenoord (Utrecht) and Prof. Dr. Silke Schicktanz (Göttingen). Her research focuses on who should have a say in decision-making and representative practices, and she is particularly interested in digital health.
Apps and big data are increasingly used to track, analyse and predict health and health behaviour via smartphones, wearables and via online behaviour. Health care has a history of failed IT investments, and health research has a reputation of being expensive to innovate in, but commercial tech-companies such as Google, Facebook and Apple have succeeded in creating momentum towards a digital change. These companies have developed and implemented technologies that offer innovative ways for collecting, storing and analysing complex and rich health-related data. This data driven research and care may be referred to as digital health. The rising attention for big data and digital health has come with high expectations and is supposedly paradigm-changing. It is hoped that the possibilities of doing research and monitoring patients and not yet patients will create new ways of predicting, treating and preventing illnesses (eg Topol 2015), but digital health will simultaneously create new risks and harm and will shift the dynamics of health research and health care.
Continue reading “Do traditional bioethical solutions suffice in times of digital health?”
Dr Aisling M. McMahon, Lecturer Newcastle Law School, and our Caroline Miles visiting Scholar in March this year
Recent international developments in gene patenting raise questions again about how bioethical concerns surrounding the grant of patents on health-related technologies are addressed or engaged with by patent law. In 2013 and 2015, the Supreme Court of the United States and the Australian High Court, respectively, delivered judgments rejecting the patentability of isolated genes. Both disputes involved Myriad’s patents on BRCA1 and BRCA2 genes. Subsequently, in March 2016 a Canadian case involving the Children’s Hospital of Eastern Ontario’s (CHEO) challenge to patents on genes related to Long QT Syndrome (LQTS) (a condition that can potentially cause irregular and chaotic heartbeats) was settled. The settlement provided a licence to CHEO to test for the syndrome and this has appeared to quell public concerns.
Continue reading “Gene Patents & Access to Health: Speaking at but not to each other”
Suzanne Metselaar, Dept. of Medical Humanities, VU University Medical Center, Amsterdam, and Gerben Meynen, Dept. of Philosophy, VU University, Amsterdam
Since 2013, a one-week Winter School at the Ethox Center is part of our master programme Philosophy, Bioethics, and Health (PBH). PBH is an interdisciplinary, two-year MA-programme of the Dept. of Philosophy of VU University in collaboration with the Dept. of Medical Humanities of VU University Medical Center in Amsterdam. Students describe the visit to Ethox as a great learning experience: it is seen as the highlight of our Master programme. And the beautiful scenery and history of Oxford are certainly a great bonus!
Continue reading “Winter School @Ethox: “A most exciting experience!””