The Epistemic Grounds for Lay Interference in the Conduct of Science, 2025, de Canson

Dolphin

Dolphin

Senior Member (Voting Rights)
This involves some discussion of ME/CFS and long Covid


The Epistemic Grounds for Lay Interference in the Conduct of Science

Chloé de Canson

Abstract.

I present a heretofore untheorised form of lay science, called extitutional science, whereby lay scientists, by virtue of their collective experience, are able to detect errors committed by institutional scientists and attempt to have them corrected.

I argue that the epistemic success of institutional science is enhanced to the extent that it takes up this extitutional criticism.

Since this uptake does not occur spontaneously, extitutional interference in the conduct of institutional science is required.

I make a proposal for how to secure this epistemically beneficial form of lay interference.
 
very interested to see how this goes down.

I have faint memories of hints by certain bps individuals suggesting that being a lay person having an illness now constitued a conflict of interest rather than making money from interests dependent on the outcome of certain research. And other seemingly spurious arguments trying to turn truth on its head.

I think the term 'extitutional' probably does a good job here, I haven't heard it before but it encapsulates something we've probably been reaching for re: hierarchies, institutions, capture etc.
 
I'm not quite sure how Granting Review Power to Extitutional Scientists will work out in reality respecitely how one can effectively manage the potential risks. We on S4ME might argue in one direction but Fiona Symington will happily say the opposite and if I'm wanting a position that fits my narrative I'll always find someone whose views or interests align with mine.
 
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Jonathan Edwards said:
The critical step is ethics committee or IRB and we have had lay members on those for decades.
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That hasn’t really worked out very well on a systemic level, though. It seems like most things to be dependent on the individual experts and lay people.

Although I wouldn’t mind it if the opinions of lay people about published work were not just dismissed based on the source of the opinion, but rather treated based on the merit of the opinion.
 
Jonathan Edwards said:
The critical step is ethics committee or IRB and we have had lay members on those for decades.
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Presumably the lay members on ethics committees aren't necessarily people with health conditions, let alone the conditions that would be the subject of any particular research submission. I wish we could get well-informed PwME having input into ethics committee decisions on ME/CFS research. Presumably that doesn't happen for any disease/condition.
 
Sasha said:
I wish we could get well-informed PwME having input into ethics committee decisions on ME/CFS research. Presumably that doesn't happen for any disease/condition.
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No it doesn't. Within the practical framework of standard ethics committees it would be hugely difficult to organise and ensure that it worked meaningfully..

On the other hand if all projects were put up online at a site dedicated to a particular disease and anyone could comment serious flaws might emerge. The problem there is that scientists like to keep their applications secret - which was always a bad idea but it is ingrained in the system.
 
I think this is the just of what is discussed above:

"I propose to call on extitutional scientists to serve as reviewers for scientific publication and grant/funding awards.28 This proposal has precedents: the use of lay scientists as reveiwers has been suggested by extitutional scientists (Fitzgerald et al. 2024) and philosophers (Santana 2022)—in the latter case, only for the review of grant applications. It is also an existing practice, for instance at the British Medical Journal, where it is known as ‘patient and public review’. My proposal would have this nascent practice become systematic where extitutional science exists. It would give extitutional scientists significant power to prevent a particular finding from being published, project from being funded, or clinical trial from taking place. In this way, it would create a strong incentive for institutional scientists to ensure that their research does not contain the major errors that extitutional scientists have highlighted, which in turn would promote the engagement of institutional scientists with the work of extitutional scientists, including by inviting them to collaborate as participatory scientists on their own research projects."
 
Jonathan Edwards said:
No it doesn't. Within the practical framework of standard ethics committees it would be hugely difficult to organise and ensure that it worked meaningfully..

On the other hand if all projects were put up online at a site dedicated to a particular disease and anyone could comment serious flaws might emerge. The problem there is that scientists like to keep their applications secret - which was always a bad idea but it is ingrained in the system.
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The governmental funding bodies could just decide to do this if they wanted to. If you want public funding, you have to be open about everything (including putting all data online, with privacy exceptions).
 
Jonathan Edwards said:
No it doesn't. Within the practical framework of standard ethics committees it would be hugely difficult to organise and ensure that it worked meaningfully
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Jonathan Edwards said:
On the other hand if all projects were put up online at a site dedicated to a particular disease and anyone could comment serious flaws might emerge. The problem there is that scientists like to keep their applications secret - which was always a bad idea but it is ingrained in the system.
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Fair enough on the practicalities of ethics committees, and I can understand scientists wanting to keep their ideas secret in the competitive framework that we have for funding. But what about a requirement by the ethics committees that the scientists have to get their report vetted by a committee of people with the health condition before submission? That raises some further questions about who sets up that committee, but I wonder if that would be feasible.

[Edit: I'm trying to think of a way to prevent another forty years of rubbish ME/CFS research.]
 
EndME said:
It would give extitutional scientists significant power to prevent a particular finding from being published, project from being funded, or clinical trial from taking place.
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This is an odd way of stating things. Whether within institutions or not it is good that others have the power to advise, comment and recommend against projects. Preventing is relevant when projects are unethical but it would be more constructive to focus on advising and perhaps requiring improvements.

I am not sure that there is ever a justification for preventing the publication of a finding though. It may be reasonable to require that it is published in a different way, with a different interpretation, but we cannot insist of results we do not like being banned!!

In other words, 'interference' is the wrong word here. Constructive contribution yes, and involvment in peer review, but not gerrymandering.
 
Jonathan Edwards said:
I am not sure that there is ever a justification for preventing the publication of a finding though. It may be reasonable to require that it is published in a different way, with a different interpretation, but we cannot insist of results we do not like being banned!!
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Yes, this part seemed quite strange to me as well. All reviews are equal, but some are more equal than others.
 
I'm also not quite sure whether ME/CFS and HIV/AIDS are necessarly on equal footing when it comes to "no conflict of interest". I think we've seen a multitude of examples where the recovery from ME/CFS or similarly Long-Covid and the stories created out of those have created some very strong conflicts of interests albeit these people still fitting into the framework of extitutional sciencists. Maybe similar stories exist for HIV/AIDS that I'm unaware of.
 
bobbler said:
I have faint memories of hints by certain bps individuals suggesting that being a lay person having an illness now constitued a conflict of interest rather than making money from interests dependent on the outcome of certain research. And other seemingly spurious arguments trying to turn truth on its head.
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Certain BPS individuals also claim health care professionals with close family have a conflict of interest (and possibly just "long term interest/care of patients", but my memory on that one is more vague).
EndME said:
For some funding bodies and grants that is the case.
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But do they follow up? One of the larger funding bodies in Norway has this policy, but I'm not sure I've seen the effect of it.
 
Utsikt said:
Which one?
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Stiftelsen Dam/Foundation Dam. They have even translated the part on "Open Science" to English in their guidelines (see point 4):

Retningslinjer for åpenhet | Stiftelsen Dam

Stiftelsen Dam gir støtte til helseprosjekter, forskning og frivillige organisasjoner i Norge. Vi fremmer fysisk og psykisk helse, livskvalitet og sosial deltakelse gjennom finansiering av innovative prosjekter og åpenhet i forskningen.
www.dam.no www.dam.no
 
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