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

Advertisements

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

 

Fundamental flaws in (cancer) research

Watching a TED talk by Ben Goldacre recently, my attention was drawn to an excellent Nature article on fundamental flaws in cancer research. The Comment Raise standards for preclinical cancer research (subscription required), by Glenn Begley and Lee Ellis, discusses some systematic weaknesses in basic biomedical research and proposes some solutions that would resolve some of these problems.

Nature 483:531–533 (29 March 2012) doi:10.1038/483531a

Nature 483:531–533 (29 March 2012) doi:10.1038/483531a

As part of their work at the Amgen pharmaceutical company, the authors have tried to replicate the findings in 53 “landmark” papers reported to reveal important advances in understanding about the molecular biology of cancer. Despite their best efforts, including contacting the scientists responsible for the original studies, getting resources from them and, in some cases, visiting their labs to repeat the protocol there, Begley and Ellis only managed to successfully reproduce the published results in 6 (11%) of cases. We are not told which experiments were replicable, or perhaps more importantly which were not, since confidentiality agreements had been made with several of the original authors (a point that was made post hoc in a clarification statement). Continue reading

Anonymous data and educational research

Comparing 'before' and 'after' data needs some identification

When undertaking educational research you often want to know how an intervention has affected a cohort, and ideally to be able to drill down into the data to see the impact on individuals. In order to match pre-and post- activity surveys, some kind of identifier is required. You could ask the students to put their names on the forms, but they may have concerns that this will have ramifications for their coursework. What else you could do?

There are a range of semi-anonymised labels you could use. At various times in my own work I’ve used formal candidate number, email username and date of birth (the latter often throws up more than one student with the same date, but handwriting can then distinguish). In each of these cases, however, it remains a relatively trivial step for someone with access to the right databases to decode the label and convert it into a name. Of course there is generally no reason why a researcher would want to do this, and students trust that you are not going to waste your precious time doing so.

What else might you do? You could ask the students to pick a bogus name or their favourite superhero, but these run several risks – including having surveys completed multiple “lady gaga”s or “dr [insert your name here]”. The students might also forget the random name they picked between the first and the second test. Continue reading

Research involving adults lacking capacity

Adherence to the ethical and legal guidelines can be problematic in any research. These difficulties are potentially compounded if the research involves adults who are lacking capacity to consent to their participation.

The toolkit can be found at https://connect.le.ac.uk/alctoolkit

The National Research Ethics Service (NRES) have recently published an online toolkit to help researchers, members of research ethics committees, and institutional research managers to ensure that projects fit with the legal requirements (for example, adherence to the Mental Capacity Act in England and Wales). The toolkit was developed at the University of Leicester and is primarily the brainchild of Emma Angell and Mary Dixon-Woods, with input from Ainsley Newson at the University of Bristol and with a little help from me.

The toolkit is split into Clinical Trials Involving Medicinal Products (CTIMPs) and non-CTIMPs to reflect the fundamental differences in the structuring and administration of each type of activity. There is also a separate section on emergency research.

We would value your feedback on the toolkit – please feel free to post comments here.

Book review: Rethinking Informed Consent

I mentioned in a previous post that I was currently reading Neil Manson and Onora O’Neill’s book Rethinking Informed Consent in Bioethics (Cambridge University Press, 2007). Not only did I finish it, but I summarised the content for a recent meeting of our Medical Sociology group – see slides, below.

As I hinted in the earlier post, I found it a hugely thought-provoking book. My colleagues, by enlarge, were less impressed – they wanted to know where any engagement was with the extensive literature on the sociological dimensions of consent.

I too have some reservations – I share the authors’ concerns that there is a lot wrong with current informed consent and data protection legislation. They suggest a radically different model for alternative priorities based on consent as waivers to permit clinicians and/or researchers to carry out specific procedures that would not otherwise be allowed in accordance with normal ethical and legal rules. They do close the book with suggestions for a series of more subtle changes, however in keeping with the old joke about someone stopping a local to ask for travel directions, I fear that “you can’t get there from here”.

  • Awards

    The Power of Comparative Genomics received a Special Commendation

  • August 2018
    M T W T F S S
    « Jul    
     12345
    6789101112
    13141516171819
    20212223242526
    2728293031