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

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

 

Biosummit 2017

The University of East Anglia (Norwich) was the venue for the annual Biosummit, a gathering of UK bioscientists with an active interest in pedagogic research. As usual there was much to reflect upon. A summary of the event is captured in this Storified summary of tweets. My own formal contribution was limited to reflections on the value of using the Royal Society of Biology’s CPD framework as a valuable mechanism for capturing the evidence of activity, and reflection upon that activity, which is increasingly required for appraisals, accreditation and applications. The slides from my talk are available below (and via this link).

This continues to be a bona fide “Community of Practice”. One of the highlights is seeing like-minded friends and catching up on what they’re doing in their lives as well as in their work. The content of the conference, however, remains central. This year there were a number of highlights for me. Continue reading

A case for Box of Broadcasts

I have recently been featured as a case study describing ways in which I use the Box of Broadcasts service from Learning on Screen. The full article can be found here.

BoB Case Study

 

Review of Neurolaw text

neuroloaw1b.jpgThe October 2016 edition of the Cambridge Quarterly of Healthcare Ethics has a special focus on Clinical Neuroethics. It contains a review of my Neurolaw book Biological Determinism, Free Will and Moral Responsibility: Insights from genetics and neuroscience.

I’m thrilled that the review is hugely positive about the book. Quotable quotes include:

  • “…a very accessible explanation of the need to reconsider notions of free will and moral responsibility in an age of scientific breakthroughs in genomics and brain science…”
  • “…an insightful philosophical account of the apparent stand-off between free will and the evidence of determinism…”
  • “…a remarkably lucid account of the relevance of science for the debate on free will and determinism…”
  • “…an impressive prudential approach, balancing the reliability of scientific achievement with caution about its applicability to criminal courts…”
  • “…an extraordinary resource for engaging moral responsibility in the age of genetics and neuroscience…”.
  • Awards

    The Power of Comparative Genomics received a Special Commendation

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