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?”
We had a great talk here at Ethox a few weeks ago by Dr Steve Clarke, on sacred values and the sanctity of life. Steve is a Senior Research Associate in the Oxford Uehiro Centre for Practical Ethics and a Senior Research Fellow in the Centre for Applied Philosophy and Public Ethics, Charles Stuart University.
If you missed this talk, you can listen again here…
Listen to Dr Steve Clarke’s talk here
Continue reading “Sacred Values and the Sanctity of Life”
Morten Fibieger Byskov is a postdoctoral researcher with the department of Communication, Philosophy, and Technology at Wageningen University & Research, the Netherlands, and our current Caroline Miles visiting scholar.
Multi-drug resistant organisms (MDROs), or antimicrobial resistance (AMR), pose a dire threat to individual and public health. Not only is AMR a danger to vulnerable individuals who require antibiotic treatment, but the over- and misuse of antibiotics also threatens the effectiveness of antibiotics for future generations. As such, AMR presents a unique problem for public health ethics and healthcare ethics that should ideally address ethical issues at both the public and individual level.
Continue reading “The Ethics of AMR Carriership”
Amy Caruso Brown, Assistant Professor of Pediatrics at SUNY Upstate Medical University, and our 2017 Andrew Markus visiting scholar
Two years ago, SUNY Upstate Medical University, an American medical school located in Upstate New York, underwent an intensive curricular reform. Previous required coursework in bioethics and in public health was reorganised and integrated into a new longitudinal course, spanning the first two years of the four-year curriculum. Within the course, students meet in small groups approximately once a week for three hours of discussion; each session includes two cases with a shared theme. For example, one such session focused on trauma and violence: the first case involved an adolescent who had attempted suicide, using a parent’s handgun, and the second involved a woman who survived sexual violence as a refugee and presented with chronic abdominal pain. Pairs of faculty with expertise in bioethics and public health guide students to consider not only what to do medically for the hypothetical patient but also how to navigate social, cultural, legal, and economic concerns. Working outward from the level of the interaction between the individual physician and patient, students are eventually asked to consider their obligations to advocate for individual patients, for their local communities, and for policies at regional, state, national and international levels, in order to promote human health. Continue reading “Tensions and challenges in a justice-oriented bioethics curriculum for medical students”
Angeliki Kerasidou and Patricia Kingori, Ethox Centre
On Saturday the 10th of August, the Nobel-prize winning physicist Steven Hawking, addressed an audience at the Royal Society of Medicine. Over his illustrious career Hawking has become used to taking in public about his work in mathematics and physics. On this occasion however, he ceased the opportunity to draw attention to his lifelong experience of the NHS. His address, which was also published in a daily newspaper the day before, raised concern about recent NHS reforms and the “political decisions” that have brought it to the point of crisis. He listed underfunding, public sector pay cap, new junior doctor contracts, removal of student nurses’ bursary and ceaseless drive towards privatisation as hindering the NHS from providing high quality care. In response, war of words and statistics ensued with Jeremy Hunt accusing Hawking of “pernicious falsehoods”. Where facts and figures can ping-pong between opposing sides and become political instruments to justify particular actions, personal experiences of the reforms can help elucidate the reality behind the numbers. Continue reading “Mr Hunt, weekend effect aside, the NHS is in crisis – both patients and staff experience it”
Gry Wester, Postdoctoral Fellow, University of Bergen
Many countries have adopted a practice whereby designated institutions play a key role in making decisions about health care priority-setting. The appropriate procedure by which such bodies should make their decisions in order to ensure legitimacy and fairness has been much discussed. In particular, Daniels and Sabin’s influential framework for procedural justice, ‘Accountability for Reasonableness’ (AFR), has been prominent in the debate . The AFR specifies four conditions that a decision-making procedure must meet in order to be fair and legitimate: the Publicity Condition, the Relevance Condition, the Revisions and Appeals Condition, and the Regulative Condition. While the strengths and weaknesses of the framework have been widely discussed, the question of how well the framework lends itself to use in a real-world institutional setting has received much less attention. There is often an implicit expectation of a higher standard of reasoning or deliberation in such public decision-making institutions – yet decision-making in a real-world institutional setting may be subject to a range of constraints and challenges that typically do not apply in the context of private reasoning. It is worth considering, therefore, how well the conditions set out in the AFR, and the concerns that they embody, map on to or capture the complexities of practice.
Continue reading “Accountability for reasonableness in an institutional setting”
Matthew McCoy, Postdoctoral Fellow in Advanced Biomedical Ethics, Penn University
Earlier this year, an expert committee convened by the U.S. National Academies of Science and Medicine published a report on the science, ethics, and governance of human genome editing. Peppered throughout the report’s 200-plus pages were repeated references to the need for more “public discussion” about ethical issues raised by human genome editing.
Continue reading “What are we talking about? Clarifying calls for “public discussion” about emerging technologies”