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Horizon 2020 and The Role of Lay People’s Perspectives in Bioethical Reasoning

By Kimberly Schelle & Nadira Faulmüller

Horizon 2020, the European Union’s 2014-2020 largest research programme ever, includes the call to pursue ‘Responsible Research and Innovation’ (RRI). RRI stands for a research and innovation process in which all societal actors (e.g. citizens, policy makers, business and researchers) are working together in the process to align the outcomes with the values, needs, and expectations of the European Society. In a recently published paper on the importance of including the public and patients’ voices in bioethical reasoning, the authors describe, although in other words, the value of the RRI approach in bioethical issues:

“A bioethical position that fails to do this [exchange with the public opinion], and which thus avoids the confrontation with different public arguments, including ones perhaps based in different cultural histories, relations and ontological grounds […], not only runs the risk of missing important aspects, ideas and arguments. It also arouses strong suspicion of being indeed one-sided, biased or ideological—thus illegitimate.”

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Taking Rape Allegations Seriously: How Should We Treat the Accused?

Last week, the Crown Prosecution Service announced that it would not pursue further action against Oxford Union president Ben Sullivan, due to insufficient evidence arising from an investigation into the two accusations of rape and attempted rape made against him. In early May, Sullivan was arrested and released on bail, prompting a chaotic six-week period for the Union as the Thames Valley Police investigated the claims made against him. After Sullivan refused to resign, a number of high-profile speakers, including the UK director of Human Rights Watch, the Interpol secretary-general, and a Nobel Peace prize winner, pulled out of their speaking commitments as part of a larger boycott of Union events.

In an open letter (which has since been taken down) calling for the boycott, students Sarah Pine, who is Oxford University Student Union’s Vice President for Women, and Helena Dollimor wrote, “Remaining in his presidency continues to offer prestige and power to someone who is being investigated for rape. This undermines the severe nature of allegations of sexual offences.” In contrast, Oxford professor A.C. Grayling penned a response to the letter refusing to cancel his scheduled talk at the Union, noting, “I simply cannot, in all conscience, allow myself to act only on the basis of allegations and suspicions, or of conviction by the kangaroo court of opinion, or trial by press…” In this post, I look at the spectrum of responses in the wake of Sullivan’s arrest, of which these two examples represent the poles. More broadly, I consider how we ought to respond – both as individuals and a society – when those in positions of power are accused of rape or other sexual offences. Continue reading

Do Not Attempt Resuscitation orders: should you discuss with the patient?

The Court of Appeal has stated that a statement in a capacitous patient’s medical notes that resuscitation should not be attempted (a ‘Do Not Attempt Resuscitation’ Order – DNAR), should usually only be inserted after consultation with the patient: see R (Tracey) v Cambridge University Hospitals NHS Foundation Trust and others [2014] EWCA Civ 822 (17 June 2014).

The facts have been widely aired in the media: see, for example, here.

Mrs. Tracey had terminal lung cancer. Her clinicians indicated in the notes that no attempts at resuscitation should be made. Her family found out about this, and were outraged, saying that the DNAR order should not have been made without consultation with Mrs. Tracey. Their quarrel was not with the medical appropriateness of the determination that resuscitation would not be in Mrs. Tracey’s best interests, but with the procedure  - the failure to consult.  This, they said, violated Mrs. Tracey’s rights under Article 8 of the ECHR.

The Resuscitation Council, intervening, said that a requirement to consult with the patient would interfere with clinicians’ ability to deliver individual and compassionate care. A patient might, for instance, be very distressed by a discussion about a possible DNAR order.

The outcome can be briefly stated:

  • Mrs. Tracey’s Article 8 rights were engaged by recording the DNAR in the notes. This followed from, inter alia, Pretty v UK (2002) 35 EHRR 1.
  • Her Article 8(1) rights were violated by failing to involve her in the process
  • Article 8(2) required the policy adopted by a Trust in relation to DNAR orders to be sufficiently clear and accessible: see Purdy v DPP [2009] UKHL 45; [2010] 1 AC 345.
  • The absence of a mandatory national DNAR policy was not a violation of Article 8. Local policies would, if properly formulated, satisfy the demands of Article 8(2)
  • The concerns of the Resuscitation Council were real, but could be met by an important caveat: there should be consultation with the patient unless the clinician ‘thinks that the patient will be distressed by being consulted and that distress might cause the patient harm.’ Continue reading

The importance of “follow up” in research ethics

Over on the Ethox blog, Ignacio Mastroleo writes about the Nuremberg code and post-trial obligations of researchers

My intention in this post is to highlight that relevance of the term “follow up” in research ethics, in particular, what has been called post-trial ethics of human health research (Sofaer and Strech 2011, NRES 2012). If my argument is sound, there might be evidence that one of the founding documents of research ethics, the Nuremberg Code, already included considerations and requirements that today might be regarded as post-trial obligations of researchers and sponsors.

see the Ethox blog for the rest of Ignacio’s post

Reading in a connected age

There is no doubt that the internet has transformed our lives in multiple ways. Here I will focus on the ways in which it has transformed our cognitive environment. I’m writing these words in Australia; as soon as I press “publish” they will be available to readers all over the world. For an academic, the “tyranny of distance” is greatly reduced by the web: it doesn’t matter where I am or where the journal is; I can have immediate access and I can email the author queries as easily from Melbourne as from London. Notoriously, it has made information available in quantities many people report they find overwhelming. Continue reading

Genetically Modifying Mosquitoes to ‘Bite the Dust’? Ethical Considerations

At some point, most people will have questioned the necessity of the existence of mosquitoes. In the UK at least, the things that might prompt us into such reflection are probably trivial; in my own case, the mild irritation of an itchy and unsightly swelling caused by a mosquito bite will normally lead me to rue the existence of these blood-sucking pests. Elsewhere though, mosquitoes lead to problems that are far from trivial; in Africa the Anopheles gambiae mosquito is the major vector of malaria, a disease that is estimated to kill more than 1 million people each year, most of whom are African children. Continue reading

The Right to Forget the Stock Market’s blemished Past

One of the great pleasures of studying human behaviour is to see that what we find in our experiments, what we theorize in our papers and textbooks – as unlikely and counterintuitive it appears to be – actually predicts what happens in so-called real life. Take, for instance, the current build-up of a stock-market bubble in the UK, happening even more dramatically in the US. In the UK, the FTSE 100 is on its way to surpass the record set during the high times of the dotcom bubble and already surpassed the levels reached during the 2008 financial bubble; in the US the Dow Jones has already reached new record highs. Despite having recently experienced the devastating consequences of a stock market bubble bursting, banks and investors return a few years later to the same hyperbolic forecasts and predictions, and start to build up another bubble. It is as if the past did not exist. Compare this behaviour with the following anecdote, which most business school students probably know.

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Can we solve the world’s problems by offering a large enough prize?

On the 22nd of October 1707, more than 1400 British sailors died when a British naval fleet sank in stormy weather off the Isles of Scilly. The disaster was later attributed to failings in navigation and sailors’ difficulty in determining their location at sea. This was a perennial problem at the time, and had persisted despite intense scientific research. Seven years later, the UK government passed the Longitude Act, offering 20,000 pounds (more than 2 million pounds in today’s money) to anyone who could develop a method for reliably determining longitude at sea. The longitude prize was eventually won by John Harrison, a self-educated Lincolnshire clockmaker.

Yesterday, 300 years after the original Longitude act, the UK Technology Strategy Board launched a £10 million pound prize competition, a new ‘Longitude prize’. The money will be awarded to a scientist or group of scientists who come up with a solution to one of a set of major global challenges – inadequate food/clean water supply for everyone, antibiotic resistance, spinal cord injury, dementia, the large carbon impact of air-flight.

The new Longitude prize is the latest in a series of innovation inducement competitions over time. These competitions have offered monetary rewards for solving problems as diverse as the development of butter substitutes, the first trans-Atlantic air flight, reusable aircraft for space flight, or an alternative fertilizer to bird poo. One novel feature of the 2014 Longitude prize is that it is seeking public input into the specific challenge to be targeted. Public voting will decide which of the six global challenges above are to be the focus of the prize.

But are innovation prizes an effective or appropriate way to solve major global scientific challenges? Continue reading

Personal Genome Project UK email disaster: If you can’t guarantee privacy, at least try to ensure trust

It’s not often that you can write on a topic in ethics whilst rolling around laughing, so I shall take this rare opportunity to make a few comments on the ludicrous breach of privacy that occurred last night when the Personal Genome Project messed up something as simple as an email list.

I’d expressed an interest in taking part in this project which aims to sequence the genomes of hundreds of thousands of people and make these available, together with trait information, to researchers. There are clear potential worries about privacy here, as there is a potential to identify individuals from such a rich source of information. Nonetheless, I was excited to take part. After all, many of the people I know and love the most would not be alive today were it not for advances in medical science which have helped to treat diseases such as cancer and type 1 diabetes. In the past, many have risked life and limb for medical science. What was the potential of a little breach of privacy to worry about? Besides which, there has been considerable attention to ethics, privacy, and security around this project. There’s a whole ethics crew. Presumably they only hire the crème de la crème of data and IT experts. Surely these guys could be trusted to use our information wisely, and to do all they could to prevent irresponsible use? Continue reading

Is Home Birth Really As Safe As Hospital Birth? “Woman-centred Care” vs “Baby-centred Care”

Imagine that you and your partner are having a baby in hospital. Tragically something goes wrong unexpectedly during birth and the baby is born blue. He urgently needs resuscitation if there is to be a chance of preventing permanent severe brain damage. How long would it be reasonable for doctors to wait before starting resuscitation? 15 minutes? 5 minutes? 1 minute?

What would be a reasonable excuse for delaying the commencement of resuscitation? They wanted to get a cup of coffee? The mother wanted to hold the baby first? The mother had catastrophic bleeding and this needed urgent attention?

If it were my baby, I would not want any delay in starting resuscitation. And there would be no justification for delaying resuscitation except some more serious, more urgent problem for another patient, such as the mother.

Yet when people choose homebirth, delay is precisely what they choose. It is simply not possible to start advanced resuscitation in the home within minutes. And their reason is not typically some relevant competing health concern that necessitates delivery at home.

Choosing home birth is choosing delay if some serious problem arises which requires immediate resuscitation.

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