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”
Kristine Bærøe, Associate Professor at the Department of Global Public Health and Primary Care, University of Bergen
A couple of months ago a new Research Ethics Act was implemented in Norway. The rationale for replacing the preceding regulation was to strengthen legal responsibilities of researchers and institutions for promoting acceptable research . According to the new regulation, researchers are held legally responsible for ensuring that they ‘act with caution to ensure that all research is conducted according to recognised research ethical norms’ . At the same time ‘institutions are responsible for: a) necessary training of candidates and employees in recognised research ethical norms and b) that everyone who conducts or participates in the research is familiar with recognised research ethical norms’ . The lawmakers have explicitly left it to the researcher community to define what is covered by ‘recognised norms’ , but implicitly the community will also have to define what should go into ‘necessary training’.
Continue reading “What is ‘necessary training’ in health-related research ethics?”
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!””