What is ‘necessary training’ in health-related research ethics?

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 [1]. 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’ [2]. 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’ [2]. The lawmakers have explicitly left it to the researcher community to define what is covered by ‘recognised norms’ [1], but implicitly the community will also have to define what should go into ‘necessary training’.

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What is ‘necessary training’ in health-related research ethics?

Gene Patents & Access to Health: Speaking at but not to each other

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[1] and the Australian High Court[2], 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[3]) was settled. The settlement provided a licence to CHEO to test for the syndrome and this has appeared to quell public concerns.[4]

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Gene Patents & Access to Health: Speaking at but not to each other

Winter School @Ethox: “A most exciting experience!”

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!

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Winter School @Ethox: “A most exciting experience!”

‘Donate to charity for cash prizes!’

Kate Sahan, The Ethox Centre, Nuffield Department of Population Health, University of Oxford

Said one breathless charity rep who knocked at my door on a peculiar evening in late September. A grubby pamphlet was unfurled, designed to dazzle with pound signs, money fans, and testimonials. The charity reps, propping themselves up on the dodgy adjoining brick wall, were clearly at the end of another punishing day of pounding Oxford’s mean pavements. So my resistance to their win-win money-making idea was treated as just another of their usual street-side heckles: I blurted out something about perverse incentives, about how it would encourage gambling. I screwed up my face in a don’t-get-it-and-feels-icky kind of way.

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‘Donate to charity for cash prizes!’

It’s an emergency: should we ‘rescue’ vulnerable emergency care patients from research?

 pulpfiction

Kate Sahan, The Ethox Centre, Nuffield Department of Population Health, University of Oxford

A current emergency medicine trial, Paramedic2, which randomizes patients to adrenaline versus saline in cardiac arrest has put emergency medicine research (EMR) back under the spotlight. There are concerns that a ‘totally useless placebo’ will be more harmful than the standard adrenaline shot given during the resuscitation protocol. However, the history of EMR has taught us that some emergency interventions rest on an insufficiently-explored and updated evidence base[1]. For example, up until the early 2000s, corticosteroids were given to tens of thousands of severe head trauma patients in the belief they were medically beneficial. But it took a systematic, placebo-controlled research study of their use called CRASH to make an unwholesome discovery: steroids had no benefit, and caused actual harm by killing or severely brain-damaging more patients than placebo.

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It’s an emergency: should we ‘rescue’ vulnerable emergency care patients from research?

Healthcare professionals need empathy too!

Angeliki Kerasidou, Ruth Horn, The Ethox Centre, Nuffield Department of Population Health, University of Oxford

Recently, a number of media reports and personal testimonies have drawn attention to the intense physical and emotional stress to which doctors and nurses working in the NHS are exposed on a daily basis. Medical professionals are increasingly reporting feelings of exhaustion, depression, and even suicidal thoughts. Long working hours, decreasing numbers of staff, budget cuts and the lack of time to address patients’ needs are mentioned as some of the contributing factors (Campbell, 2015; The Guardian, 2016). Such factors have been linked with loss of empathy towards patients and, in some cases, with gross failures in their care (Francis, 2013).

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Healthcare professionals need empathy too!

Ethical issues raised by the research of crowdsourcing as a new medical technology

Jonny Attwood, 6th Year Medical Student at the University of Oxford

To crowdsource a project means outsourcing it to the crowd, where ‘the crowd’ refers to large number of people operating on a given project through the World Wide Web. Crowdsourcing has established itself in the form of crowdfunding (the funding of projects through a large number of small online donations) and in the development of projects like Wikipedia, the online collaborative encyclopaedia, and now it is beginning to be used as a tool for scientific research.

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Ethical issues raised by the research of crowdsourcing as a new medical technology