Module 4: Framing Law and Science

4.3 Reporting scientific ‘Breakthroughs’

This unit looks at the reporting of scientific research into consciousness. Scientific exploration can disrupt traditional ways of thinking and give new ways of approaching a problem. Neuroscience attempting to explore the experience of consciousness is a vibrant area of enquiry, using new technical tools to examine, for example, electrical activity and blood flow within the living brain.There are also efforts to try to raise patients’ levels of consciousness through trying out drugs in different ways or new surgical interventions.

Academic study of how the media report science highlights the quality and insight of some reporting but also routinely finds a series of common problems. One set of problems revolves around the image of science that is promoted. For example:

    • there is preference for writing about ‘breakthroughs’ (always more newsworthy than the idea of slow, incremental science)
    • there is a focus on ‘the eureka moment’ of discovering ‘the truth’ rather than acknowledge how science develops through cumulative work and repeated testing
    • there can be a cult of personality around certain individual scientists (rather than acknowledging the collaborations and team work involved). 

Another set of problems revolve around the focus and interpretation of findings. Problems include:

    • It is also common for journalists (or the press releases on which many rely) to prematurely promote an extrapolation from lab science to bedside delivery (when practical applications may remain many years away, or never be realised at all). There is a danger of promoting unrealistic hope and expectations for those confronting health crises now.
    • science reporting can sometimes neglect to acknowledge the social context in which scientific work plays out in practice.
    • cutting-edge science interventions to ‘solve’ a problem are much ‘sexier’ than routine, established health and social care interventions and novel science attracts more attention. In the unit on misdiagnosis you will have noted how discovering that the patient has some conscious was attributed to brain scanning when in fact it had been confirmed by a very traditional bedside test: the Coma Recovery Scale.

Key context: Journalists are often blamed for problems with reporting but it is important to look at the role of scientists, funding bodies and press officers seeking to promote the findings too. One study of press releases from leading universities found that 40% of the press releases contained exaggerated advice, 33% exaggerated causal claims, and 36%  exaggerated inference to humans from animal research. Such exaggerations  were closely associated with subsequent  news stories containing similar exaggerations. The authors conclude “Exaggeration in news is strongly associated with exaggeration in press releases. Improving the accuracy of academic press releases could represent a key opportunity for reducing misleading health related news.” (Sumner et al., 2014: see full reference in ‘Resource’ unit of this course).

News reporting of lab research into consciousness illustrates many of the key issues that have concerned scholars studying science reporting. The trope of scientific ‘breakthrough’ is very common and extrapolations about implications for bedside care are often premature or exaggerated.

Sometimes key information may be withheld (even if withheld in good faith). For example, at the end of module 2 you were invited to look at 3 newspaper articles. One of these highlighted how an implant had raised a man’s level of consciousness. Researchers reported: “He is still paralyzed, he cannot talk, but he can respond. Now he is more aware.”

See above for an example of a headline generated by the science reporting (a headline you can probably deconstruct in interesting ways in relation to what you know about VS and MCS). Also have a look at the notes of caution sounded by expert commentators from the Science Media Centre (a centre devoted to trying to improve the media coverage of science). These experts highlight, for example, that caution is needed when interpreting a single case study and a similar promising case study published many years earlier had not let to therapeutic interventions.

expert reaction to study looking at vagus nerve stimulation in a patient in a vegetative state

[[Thank you to the person on this course who found this page on the Science Media Centre allowing me to pop in as a late addition! All crowd sourcing of useful further resources welcome! Do send me anything you find]

 

There was one thing that the Science Media Centre failed to note – because they didn’t know about it (not did the journal that published the paper or any  of the journalists covering it), was that there was a key missing piece of information in this case. The patient was actually dead!

The fact that the patient died prior to the publication of the case report did not emerge until some time later. This caused some controversy when the fact that he was already dead subsequently emerged. The scientists were criticised for withholding that information (even though the death was not a consequence of their interventions) and they were challenged for talking about him in the present tense. (You can read more about this here)

 

 

 

 

 

 

 

 

 

If you choose to read the article about this case you might want to consider the following questions?

  • What would you have done if you were in the scientists’ shoes – what was the right ethical decision?
  • Do you think media coverage of this case would have been different if journalists had known that the patient had died?
  • The scientists here are presenting an individual case study – can you find out if there has been more recent work expanding on the promising results of this case study?
In other cases research is reported with complete transparency but questions might still be asked about how findings are framed and presented, and the thinking behind press release designed to promote the science, the scientists and the science funding body. Gabby Samuel and Jenny Kitzinger looked in detail at the reporting of the science of fMRI (functional Magnetic Resonance Imaging). You may remember headlines from the time or from similar ‘breakthroughs’ reported over the last couple of years.
Activity 1, Key Reading: Have a look at this article looking closely at the media reporting of neuro-scientific work on patients with severe brain injuries and exploring the responses of families. The abstract is reproduced below.

 

Title: ‘Reporting consciousness in coma: media framing of neuro-scientific research, hope, and the responses of families’,

Journal: JOMEC Journal, Volume 3

Authors: Gabby Samuel and Jenny Kitzinger (2013)

Abstract: This paper examines the public representation of, and family responses to, scientific studies into consciousness in coma-like states. We examine the publicity surrounding high-profile studies using functional Magnetic Resonance Imaging (fMRI) on ‘vegetative’ or ‘minimally conscious’ patients and compare this with family views. Our findings show how, with a few notable exceptions, the research was presented as an amazing breakthrough offering a potential ‘voice’ and choice for patients and hope and comfort for their families. We argue that such representations ignored key limitations, evoked unrealistic visions of recovery, and promoted very narrow representations of family reactions. The comparison between public representations of the science and responses from families with experience of this issue highlights the complex social/medical world into which neurotechnologies intervene, and points to the absence of a range of patient/family perspectives in public discourse. We conclude with suggestions for how those promoting the research, and the journalists reporting its implications, could act to ensure more responsible coverage and enhance public debate.

 

Activity 1

You can read the full article here: “Reporting Consciousness” in the journal,  ‘Journalism, Media and Cultural Studies’ (v3, 2013).

As you read consider the following questions:

  • What are the responsibilities of Public Relations [PR] representatives of universities, companies or funding bodies when promoting research findings?
  • How can scientists consider the implications of their work for patients and their families when broadcasting about ‘breakthroughs’?
  • How are patients and their families represented in science reporting?

You can also seek out a press release or a newspaper report on-line about fMRI (or more recent) research around ‘consciousness’ in brain injured individuals and see if you can identify some of the problems discussed by Samuel and Kitzinger – highlight key sentences which you think might illustrate such issues. Look at any images used too.

 

Activity 2 -Reflect on a 30 second preview promoting a documentary: ‘The Mind Reader”

In 2017 Adrian Owen’s work was featured in-depth in a Panorama documentary. The more in-depth format allowed for much more sensitive portrayal of patients, their families and what recovery meant. The 30 second advertising preview to attract viewers is a different genre again.

Have a look at the clip  here: (https://www.dailymail.co.uk/video/video/video-3713/BBC-Panorama-The-Mind-Reader-Unlocking-My-Voice-preview-clip.html

Note down any observations you have about this clip. Start by focusing on the words, for example:

  • the title – how is the scientist being presented?
  • who is the ‘you’ being addressed?
  • How is the audience positioned?.

Then watch it again with a focus on:

  • The way words are revealed on screen’
  • The quality of the voice over
  • Music and sound effects
  • Camera angles

Write 500 words summarising your observations.

Activity 3 – If you are involved in caring for PDoC patients

This activity is particularly for you if are a healthcare professional (or friend/family member). If you are involved in trying to work out a patient’s level of consciousness or to support any severely brain injured patients to maximise their level of consciousness, ability to communicate or quality of life you will know the pain-staking work involved.

This can include fine-tuning drugs (eg to manage seizures or pain), managing skin care and positioning, learning about the patient and what might engage them, carrying out therapies, and conducting careful repeat tests.

  • Have you ever seen a mainstream news headline celebrating how such pain-staking work has been followed by a shift in a patient’s level of consciousness?
  • Write your own splash headline now celebrating what you do! (You can add it to the comments section – we’d love to see some examples)
Here's one (Thanks Amy): 
"Stop Press: INTERDISCIPLINARY TEAM WORK ENABLES SEVERELY BRAIN INJURED PATIENT TO TASTE HIS FAVOURITE YOGHURT AFTER 6 MONTHS IN HOSPITAL"
Activity 4 – IF YOU ARE A JOURNALIST OR JOURNALISM STUDENT

Earlier we highlighted how press releases about health related science often include exaggerated claims. How do journalists work to ensure they are not simply reproducing such claims uncritically of without context.

One clear finding is that where journalists include quotes from an independent expert source (not just the sources provided in the press release) their reports contain less  exaggerations This may indicate the value of journalists looking in greater depth at a story, and not just relying on a press release but also talking to other experts beyond those who did the research (or funded it, or are promoting it. (Bossema et al., 2019)

  • If you are a journalist please share with us other things you do that are important when picking up on a press release
  • Can you think of other strategies that journalists adopt? Make a note in your learning diary or please do add suggestions to the comments section below.
A lot of science journalists, scientists and students studying science are very interested in this area – and lots of people are simply fascinated by how the brain works or questions such as what makes us human, what does it mean to be self-aware or ‘what makes me, “me”? We’ve therefore developed a series of activities to expand engagement with this module. These may be particularly useful for  students and researchers in neuroscience, but of interest to anyway with a fascination for what it means to be conscious and the relationship between our brain and our personhood.

If science is not your ‘thing’ move on to the next module – but if this is an area which particularly interests you then you can delve further through the following activities. (All of these activities can also be adapted for use in formal assessment as part of a University Course – so if you teach in this area please get in touch).

 

The following optional activities are recommended by science students who want to explore science reporting in more depth.  Click on each activity for more details.

Activity 5, optional - Unpacking debates about the reporting of science of consciousness

(Estimated time: 1hr)

  • The academic article by Samuel and Kitzinger you’ve read provoked some debate, with a very interesting reaction from one of the scientists quoted in the piece and the authors, for their part, then wrote a response. Read how this debate played out here. How does this exchange of views influence your thoughts on the original article?
  • Listen to this Guardian podcast discussion between Jenny Kitzinger and one of the main scientists involved in neuro-scientific work around consciousness (Adrian Owen).
Activity 6, optional - mapping the science against the bedside experience, engaging with healthtalk.org

(Estimated time: 1 hr)

The brain scanner or the bedside – what does (un)consciousness or minimally consciousness look like? 

If you are particularly interested in neuroscience, and we know this course interests students and researchers in this area, then here is some additional material for you. Set aside 20 minutes to take a look at short clips of family members talking about what it is like visiting a relative in a prolonged disorder of consciousness. You can find the clips here, on the healthtalk.org website. Consider the following questions:

  • From the different family descriptions of the patient what do you think might be going on in the patient’s brain? For example, Angela describes her usually unresponsive husband crying on his birthday and Cathy talks about her teenage brother’s ‘unseeing eyes’ and says “I still feel terrified now at the prospect that he had any awareness at all”
  • What do you think are the implications of fMRI scanning on patients in disorders of consciousness in light of what you hear family members say? Make a list of three or four key points.
  • Thinking about these families as readers of the newspaper – what messages do you think it is important to convey, or not to convey, to them via press releases when publicising an fMRI study?
Activity 7, optional - reviewing Panorama documentary, 'The Mind Reader: Unlocking My Voice' & engaging with criticism published in the BMJ
 

(Estimated time 3 hrs)

Do you want to reflect more on the neuroscience and how it is represented in the media? We recommend the powerful and moving documentary “The Mind Reader: unlocking my voice”, View the programme here

  • Read the critique by Lynne Turner-Stokes et al published in the BMJ  here 
  • Read the rebuttal from the medical correspondent involved, Fergus Walsh, and some of the scientists here
  • How is diagnosis and misdiagnosis explored and how is the science around this represented?
  • You might also like to look at the representations of care here – note, for example, the presentation of the centre (a major centre of expertise in a beautiful setting) and the portrayal of patients. Note how the opening sequence shows the patients outside, on a sunny day, surrounded by friends celebrating his birthday; other scenes show the care and activities for these patients such as hydrotherapy. These are all notably absent in other representations you’ve examined such as the 10 minute video about Julian Coles in the ‘Politics of Visualisation’ unit.

Write a 500 words analysis of this documentary from your own perspective (or set up a debate with fellow students). It is often best to identify a single theme to examine in depth eg ‘representations of science’ or ‘families’ or ‘care’ or ‘patients’ – if you try to do to much you may miss the opportunity of looking in more detail at particular themes.

Activity 8, optional - reviewing an educational piece about the science of consciousness
 

(Estimated time 2 hrs)

Do you want to reflect more on the neuroscience and how it is represented? The Open University has a powerful piece about the science written by the  science journalist Roger Highfield. You can find it here https://www.open.edu/openlearn/health-sports-psychology/psychology/freeing-people-caught-between-life-and-

First read it as someone interested in what it is saying – what does it make you feel, think? What do you learn from it?

Second, read is as someone interested in how it works to make you feel and think certain things, analyse it as a text. This could include the following steps to start with:

    • Examine the title/headline – what language is used, who are the people focused upon?
    • Examine the image – what message does it convey in this context?
    • What metaphors are used by the scientist quoted here in describing being in a disorder of consciousness and who is the ‘you’ being addressed by the scientists
    • How are contrary views presented in the piece?
    • How does the context of the piece (Open University educational resource) influence how you might ‘read’ the piece

Write up some notes about this.

Third do some extra research to contextualise the piece

    • Follow up on some of the cases presented here – you could read the original scientific articles and press releases, or search for updates on the individual named or cases discussed
    • Examine the media profile of these cases too – how do they feature in media accounts

Is there anything you learn from your research that changes how you read the piece?