Questions at the Edge of Consciousness: A review of “Into the Grey Zone”

Imagine (and I hope this is a theoretical scenario rather than a real experience) that a friend is involved in a road traffic accident. The collision leaves them in what neuroscientist Adrian Owen terms the “grey zone”; the patient is alive (and does not require artificial ventilation) but they are in a “vegetative” state. Their body has periods when they appear to be awake, but they do not demonstrate any awareness of their circumstances. In the absence of intentional movement, how can we be sure that they are not, in fact, conscious – hearing the conversations next to their hospital bed, maybe even experiencing pain?

ITGZFor a long while this question seemed unanswerable. However a flurry of scientific papers, published about a decade ago, demonstrated beyond reasonable doubt that it was possible to communicate with some patients in an apparently vegetative state. Now Professor Owen has published a memoir Into the Grey Zone capturing his experience at the heart of that groundbreaking work. (I couldn’t wait for publication of the Anglicised version, so I actually have “…Gray Zone“, but am assured that aside from spellings and the occasional idiom, the contents are the same. I notice on social media that Owen himself refers to the book at ITGZ which not only saves a few characters but neatly side-steps the issue of the different title.)

Whatever we choose to call it, this is a remarkable and moving read – I cannot think of any other book that has simultaneously thrilled me with the clear and logical presentation of scientific experiments and moved me to tears with their implications of the experiments for patients and their families. What follows is my rather lengthy summary of the book, followed by some specific reflections. If you want to skip directly to the latter, click here.

The book follows a general pattern in which each chapter introduces us both to the individuals who had slipped into the grey zone, and to the emerging tools of neuroinvestigation which enabled Owen to demonstrate that many of these patients, perhaps 15 to 20% of those previously considered as “vegetative”, do in fact retain some level of consciousness.

The first chapter The Ghost That Haunts Me is slightly different. It features two central characters who slip into the grey zone, but neither is a patient of Owen. Instead they are his mother, who developed a brain tumour, and his former lover Maureen who suffered a subarachnoid haemorrhage that left her in a vegetative state. Continue reading

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“Are you my mummy?”*: Diverse notions of “motherhood” in the IVF era

Back in autumn 2017, I was asked to be a contributor at the Edinburgh Biomedical Ethics Film Festival on the Ethics of Surrogacy. As part of the weekend we watched the 2016 documentary Future Baby, and the 1990 film version of The Handmaid’s Tale.

It was during my preparation for that event that I found myself ruminating on the diverse tasks that constitute being a mother. The anniversary of IVF brings this back into my thoughts.

There are, in essence, three contributions that a mother would naturally make:

  • producing the egg which provides half of the chromosomes for the resulting child (plus nutrients and some other genetic material via the mitochondria),
  • offering the womb in which the baby will develop (whilst receiving both nutrition and epigenetic influence on gene expression), and
  • caring for the infant after birth, and as they grow on to eventually attain their own independence.
motherhood too

Motherhood can now be subdivided into different roles (cartoon inspired by Morparia original)

These phases could be summarised as the genetic, the gestational and the nurturing dimensions of motherhood (the term “social” is sometimes used in the literature to cover this third category, but I prefer to the notion of nurture). Continue reading

Can “Synths” and “Posthumans” have Human Rights?

In the recently-finished third season of the intelligent drama Humans [spoiler alert…], the government has set up a Commission under the chairmanship of Lord Dryden to consider the legal status of synthetic robots (Synths). These creatures had become conscious at the end of the previous series (if you want to know more, I do recommend that you watch the box set).

chan

Mia (Gemma Chan) is a central character in the first three seasons of Humans

Against that backdrop, I was especially interested to read a new paper in the Medical Law Review by David Lawrence and Margaret Brazier. Legally Human? ‘Novel Beings’ and English Law considers ways in which the European Convention on Human Rights and English case law might be brought to bear on the legal status of human-like creatures. The authors favour the description of such beings as “sapient” rather than the more common “sentient”, not least as sentience was famously used by philosopher Jeremy Bentham as justification for broadening protection from suffering to non-human animals.

legallyhuman

Lawrence and Brazier examine three types of entity whose production is scientifically-plausible using existing technologies (whilst acknowledging that other methods might emerge in the future). These creatures are: Continue reading

Avoiding Scientific Misconduct in Prague

I recently spent an excellent few days in Prague, attending the 43rd FEBS Congress, at which I gave a talk about the importance of bioethics teaching, and ran a workshop on developing case studies in ethics teaching. A session on the final morning Scientific (mis)conduct: how to detect (and avoid) bad science illustrated one reason why this is a crucial dimension in the education of scientists.

prague1

I live-tweeted the presentations and organised them at the time within five threads. The post below represents a first attempt to use Thread Reader (@threadreaderapp) which operates a very straightforward “unroll” tool. Following the sad demise of Storify, I was curious to see if this would be a suitable alternative for curation of tweeted content. I have elected to offer both links to the unrolled threads and screenshots of the resulting notes. I’m relatively pleased with the outcome.

Getting back to the content of the session, it proved a really insightful overview of several aspects of research misconduct, and publication ethics. Continue reading

Responsible Conduct of Research

In June 2018, the Australian National Health and Medical Research Council published the second version of their Australian Code for the Responsible Conduct of Research, replacing the original 2007 edition.

Cover of Australian Code 2018

The 2018 issue of the code replaces the original 2007 version

This is an outstanding document that deserves a prominent role internationally in guiding the promotion and maintenance of ethical conduct in research. As the preamble notes, the Code seeks to spell out the “broad principles that characterise an honest, ethical and conscientious research culture” (p1).

The list of 8 principles, 13 responsibilities for institutions and 16 responsibilities for researchers are clearly articulated and readily transferable to other contexts.  Only a couple of items in the code, pertaining to the rights of Aboriginal and Torres Strait Islander peoples are specifically “Australian”, and it might be argued that these only exemplify what ought to be good practice for engagement with any biogeographical community.

As noted above, the clarity of the contents is exemplary. Interested parties are therefore encouraged to read the original document (A copy of the Code is available via this link). For those with limited time, the top line of the 8 principles are:

  1. Honesty in the development, undertaking and reporting of research
  2. Rigour in the development, undertaking and reporting of research
  3. Transparency in declaring interests and reporting research methodology, data and findings
  4. Fairness in the treatment of others
  5. Respect for research participants, the wider community, animals and the environment
  6. Recognition of the rights of Aboriginal and Torres Strait Islander peoples to be engaged in research that affects or is of particular significance to them
  7. Accountability for the development, undertaking and reporting of research
  8. Promotion of responsible research practices

 

Taking part in a Twitter-only conference: some reflections on #PressEDconf18

pressedED18

On 29th March 2018, I participated in the Twitter-based conference, #PressEDconf18. Those who follow me on Twitter (@cjrw) may know that I am an occasional contributor to the weekly Wednesday night #LTHEchat live discussion which has been running since 2014. I am also an enthusiastic live-tweeter at conferences, usually including the official Hashtag which allow for interested parties to follow what others are saying about the event as well as facilitating aggregation using the soon-to-be-sadly-missed Storify service.

This event was slightly different from a regular conference as there was no associated physical gathering. As keynote contributor Jim Groom noted, “I’ve been to conferences that used a hashtag, but this is my first conference that is a hashtag“.

JimGroomTweet

Although this was not the first event to take this format, it was certainly one of the first, and it was interesting to be part of a pioneering approach. #PressEDconf18 was the brainchild of Natalie Lafferty (@nlafferty) and Pat Lockley (@Pgogy). The theme was educational uses of WordPress blogs (for full schedule see here). I submitted two proposals; they were in the format of a tweet, so it wasn’t an especially onerous task. One related to my use of a WordPress blog to host Careers After Biological Sciences, a repository of careers awareness resources built up over the past decade. The second was more generic advice for anyone considering starting up an educational blog. It was the latter that was accepted. Continue reading

What characterises “quality” in ethics education?

I recently read Ercan Avci‘s 2017 paper Learning from experiences to determine quality in ethics education (International Journal of Ethics Education 2:3-16). Avci, from Duquesne University, conducted a literature review looking for shared characteristics in peer-reviewed, full text articles with “ethics education”, “ethics teaching” or “ethics learning” in the title and “ethics” or “ethics education” in the keywords during the period 2010-2015 (which the author describes as the “the last five years”, though it looks like six years to me). A total of 34 papers were examined, drawn from 11 academic disciplines and 10 countries (plus 3 international studies). As one might anticipate, the USA was the most represented geographical context, and healthcare (Nursing, Medicine, etc) was the discipline with the highest number of studies. I was a little surprised to see that none of the reports were from the UK.

As the author himself points out, this is a rather eclectic mix of settings. This might be spun either as an advantage (e.g. capturing diversity) or as a limitation (when it comes to drawing universal lessons). Notwithstanding these issues, Avci makes a number of important observations, some of which resonate with my own experience (e.g. see the Notes for the Tutor section, p16 onwards, in my contribution to the 2011 book Effective Learning in the Life Sciences).

AVCI

Taking a step back, there is an initial question before examining the quality of any ethics programme, namely is ethics being taught at all? It is apparent that many courses – even in Medicine, even in the States – do not include a formal ethics component. However, a broad range of subjects are now including some ethics in their teaching. Continue reading

  • Awards

    The Power of Comparative Genomics received a Special Commendation

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