Science and technology continually throw up ethical problems as they progress. As previously unimagined possibilities are made imaginable, unforseen or underestimated downsides appear. Groundbreaking technologies generally experience this, and mature ethical discourse can lag significantly behind.
When potential downsides first surface, they may not always be openly discussed and debated. The proponents of new technologies have an understandable zeal for the progress of their pet projects. It’s likely they are hugely profitable. The public discussion of potential problems that may never materialise is at best a nuisance and at worst a showstopper. But the public have a right to know of potential future risks.
Ethical issues often concern the health and wellbeing of the population, on a scale from global extinction (e.g. nuclear weapons technology, climate change) through illness and localised effects (eg 5G networks, fracking) to fundamental societal change (eg nanotechnology, transhumanism).
In 1796 Edward Jenner inoculated an 8 year old boy (the son of his gardener) with a cowpox infection and began the journey that resulted in the eventual eradication of smallpox. It is unlikely this particular small scale clinical trial addressed the issue of informed consent.
The world is a smaller place now and modern communications and social media accelerate and intensify the spread of information and speculations. But the core question is still the same:
**** When should putative benefits to the public good justify the suppression or limitation of discussions which may derail or delay progress? Science is always contested but are there circumstances where the fight should be fixed? ****
The Messenger RNA (mRNA) technology being used in the Pfizer and Moderna vaccines for COVID19 is clearly promising. Before the COVID pandemic largely highjacked research programmes ( and after years of suspicion that it was a ‘cinderella’ technology) progress was finally being made in its use as a cancer therapy. The principle was similar – the immune system is provoked to attack a tumour rather than a virus. 
As with all experimental interventions there is a balance of risk. But a decision on an experimental cancer therapy can be taken by the individual who has the cancer giving their informed consent. The risks either way are theirs alone. The mass use of mRNA technology in millions of vaccinations involves rather different informed consent issues.
The very idea that the individual’s right to know all the risks should be secondary to the potential common good benefit is anathema to libertarians. It is an uncomfortable thought whatever your politics, and few would want to be in the position of making the call.
Potential downsides are by their nature difficult to quantify, so the issue of trust in experts and proposing institutions is a key factor. In that context the motives, track record and goodwill of these proponents must be scrutinised. Lurking behind an increasingly widespread distrust of ‘authority’ are two factors: the enormous power imbalance between the proposers and the users; and the technological hubris of the proposers.
The power of major corporations and their enriched executives enables them to capture nation state politics and mainstream media, and in that way control the narrative. Profit is not always the entire incentive, though it often presents as a sign of value and progress. The intoxicating ability to influence events can be habit forming. Rather than treasuring our exceptions (as suggested – ironically enough – by a geneticist, Willliam Bateson)  and seeing what can be learned from them, those offering questioning narratives are marginalised, suppressed, defunded, personally attacked, gagged, imprisoned or worse. This is not just a matter of narrowing the ‘Overton window’ (a phenomenon Chomsky and others have pointed out) – it involves the suppression of contrarian ideas. It even has a modern name – ‘cancel culture’ .
The seeking of informed consent from the public should entail the description and acceptance of uncertainties. The potential of the technology for humankind can reasonably be set out. There is, indeed, a chance for participants to play a part in clinical trials as part of their commitment to the common good. But the objections of those with a counter narrative should also be addressed point by point, head on – in detail and in public.
By not doing so the implied-view is that the public cannot follow the detail of full disclosure (authoritarian) or would not want to play their part if well informed (indivualistic projection?). Suppressing counter views, making ad hominem attacks and using behavioural psychology techniques to instil fear all hint at a lack of confidence in the core case.
The argument for full patient disclosure seems to date only from around 1850. Prior to that, from the Hippocratic Oath onward, it was expected that the physician would be free to conceal information from the patient in order to give the best care possible in their expert opinion. The term informed consent was first noted in a medical malpratice case in 1957. But for a profit-oriented healthcare industry backed by the overpowering financial might of big-Pharma and with a well documented poor ethical record  ‘trust us, we know best’ is not the best message.
 “If I may throw out a word of counsel to beginners, it is: Treasure your exceptions! When there are none, the work gets so dull that no one cares to carry it further. Keep them always uncovered and in sight. Exceptions are like the rough brickwork of a growing building which tells that there is more to come and shows where the next construction is to be.”
–William Bateson, in The Method and Scope of Genetics, 1908.
: NB: Jureidini and McHenry : The Illusion of Evidence Based Medicine (pub 2020)
Featured image author:Evan Earwicker Source: https://www.freeimages.com/photo/signature-sticker-1239475
Note: Feasta is a forum for exchanging ideas. By posting on its site Feasta agrees that the ideas expressed by authors are worthy of consideration. However, there is no one ‘Feasta line’. The views of the article do not necessarily represent the views of all Feasta members.
Graham Barnes is a Director of Feasta and co-organiser of the Feasta Currency Group. He holds a PhD in Computer Science and worked at a senior level in IT and online marketing in a previous life. His past projects have included the design and delivery of currencies to be sponsored by a local authority; by a social entrepreneur to complement and enhance a well established sustainability methodology; and by a ‘local-aware’ restaurant chain. His focus is on the systemic dysfunction of mainstream money and finance, the inequity it accelerates and promising developments for its democratisation and detox #fairgreenmoney
6 Replies to “Informed consent and the ethics of technology”
I’m pretty touchy about vaccines right now and I want to make sure FEASTA stays on the side of science and public health. In August 2021, something like 99 percent of new infections are unvaccinated people. I am not saying let’s round up everyone and vaccinate them all. But it does make me question what are the limits of libertarianism in a society of less-scientifically-literate people who endanger public health by preventing us from getting to herd immunity. After the brief late Spring hope of the pandemic fading away, it looks like we will instead have more lock downs, and I think it is fair to say it will be the fault of the unvaccinated-by-choice. I am not talking about people in India or other poorer countries who lack access to vaccines due to global inequality (which is a good topic for a future blog post), I am talking about the people in wealthy countries who are choosing to remain unvaccinated due to conspiracy theories (or maybe their version of balancing the uncertainties contradicts the advice of public health officials). In a perfect world, sure, let’s wait and do the double-blind multi-year studies and get all the answers and then immunize; but in the real world, let’s end this pandemic ASAP.
Thank you Graham for a balanced and finely written piece. A breath of fresh air, actually.
I think we are all pretty touchy about Vaccines. One of many things that upsets me is the way that there is a misleading narrative that this is a “disease of the unvaccinated” – the very narrative that you put forward in your response to Graham. The most succinct way that I can respond to this is by quoting from the Mercola website as follows:
“According to the U.S. Centers for Disease Control and Prevention, you’re not counted as fully vaccinated until a full 14 days have passed since your second injection in the case of Pfizer or Moderna, or 14 days after your first dose of Janssen, despite the fact that over 80% of deaths after the vaccines occur in this window. How convenient.
“Anyone who dies within the first 14 days post-injection is counted as an unvaccinated death. Not only does this inaccurately inflate the unvaccinated death toll, but it also hides the real dangers of the COVID shots, as the vast majority of deaths from these shots occur within the first two weeks are the unvaccinated. If you’re unvaccinated, CDC guidance says to use a cycle threshold (CT) of 40, known to result in false positives. If you’re vaccinated, they recommend using a CT of 28 or less, which minimizes the risk of false positives
“The CDC also hides vaccine failures and props up the “pandemic of the unvaccinated” narrative by only counting breakthrough cases that result in hospitalization or death.”
I’m currently working on an article about all of this that will eventually go on the Credo website – in the updates section.
@ Mike Sandler indeed, let us not rock the boat as we embark for our long and hazardous voyage, lest she sink in the harbour.
The material below is taken from an expert testimony from Geert Vanden Bosche DVM PhD which was given to a New York Rabbinical court held about vaccinating children. (And filmed for a video ). Vanden Bosche trained originally as a vet. He is also virologist and a vaccinologist who has taught in many universities and has a long history of working for the vaccine industry at a very high level. My account here is taken almost word for word from his testimony in the video posted to the Odysee website at the end of October 2021. I am not a virologist and am just copying – but Vanden Bosche ought to know about this given his long track record…..(link at the end )
A vaccine will normally kill a virus but these covid “vaccines” do not have a completely sterilising capacity. It does not kill and eliminate the virus. Thus what you get when you mass vaccinate a population with a vaccine that can continue to spread is a mass propagation of more infectious variants.
According to Vanden Bosche the vaccines are not the cause of the emergence of mutants – mutants arise all the time among viruses – but because the population mounts an immune pressure on the virus it is the variants that are more infectious and which can overcome the immune pressure which have an advantage. They have a competitive advantage as compared to the original strains that are less infectious – particularly if and when these more infectious strains start being transmitted in the population.
Since mass vaccination started there has therefore been a propagation of these more infectious strains. Of course they existed and were circulating before – they were not directly caused by the vaccines – the vaccines created a comparatively more favourable environment for them.
In other words the pressure exerted on the virus by non sterilising vaccines created an advantage to the viruses that have been least vulnerable to the vaccines that then evolved further to becoming vaccine resistant. This is why vaccine efficacy is waning. Since March this has been what molecular epidemiologists are finding.
In particular the part of the virus that has the active role in infecting humans is the virus spike. It is the spike that has been created in the body by the vaccines – in the theory to train the body to recognise and attack them. However the mutations that have now appeared have been changes in the spike itself. Although the vaccines have trained people’s immune systems to attack the spike of the original Wuhan variants – the growing resistance to the vaccines has taken the form of a mutation to the virus in the form of changes to the spike itself away from the form of the Wuhan original virus.
This has made it possible for the spike of newer variants to resist neutralising antibodies produced by the immune system.
In fact it is much worse than that. This is because there are two kinds of antibodies, neutralising and binding antibodies. With the mutation the covid virus becomes immune to an attack by neutralising antibodies but binding antibodies can still bind to them. This does not help at all – on the contrary it helps the covid virus in its new form able to outcompete another part of the immune system, namely the innate immune system.
The innate immune system is what has hitherto been protecting children and young people and helps older people too – unless the innate immune system is put out of action by binding antibodies in the way described. What might be at stake here is the loss of every kind of immune protection – and not just to SARS CoV 2. There could then be a loss of protection against infection to other kinds of coronavirus too.
Now let me give a bit of personal detail. At the beginning of the pandemic and the decision to make vaccines available I did a bit of research. I decided that I would wait and see as I was not convinced enough time had lapsed since their trials to give me reasonable certainty that they were safe and efficacious. In this research one article that I came across that had appeared in a recent peer reviewed journal was titled “Informed consent disclosure to vaccine trial subjects of risk of COVID-19 vaccines worsening clinical disease” by Timothy Cardozo and Ronald Veazey in the International Journal of Clinical Practice.
This article has the conclusion:
Conclusions drawn from the study and clinical implications: The specific and significant COVID-19 risk of ADE (antibody-dependent enhancement) should have been and should be prominently and independently disclosed to research subjects currently in vaccine trials, as well as those being recruited for the trials and future patients after vaccine approval, in order to meet the medical ethics standard of patient comprehension for informed consent. https://pubmed.ncbi.nlm.nih.gov/33113270/
I sent a number of emails to the local health service where I live and wrote. ” may have missed it but I cannot seem to find this disclosure in your literature. Have I missed it or is it not there? If it is not there what would you say to the charge that you have not met the “medical ethics standard of patient comprehension for informed consent”?
Needless to say I never got a reply from the Patient Experience Team of the Nottingham and Notts Clinical Commissioning Team. If, following the process described by Geert Vanden Bosche, millions of people who also did not know about the risks are now seriously ill and/or die then we know who is responsible.
Comments are closed.