Informed consent and the ethics of technology

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. [1]

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) [2] 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 [3] ‘trust us, we know best’ is not the best message.

Endnotes

[1]: https://phys.org/news/2021-02-mrna-vaccine-cancer-immunotherapy.html

[2] “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.

[3]: NB: Jureidini and McHenry : The Illusion of Evidence Based Medicine (pub 2020)
https://www.nature.com/articles/d41586-020-01911-7

Featured image author:Evan Earwicker Source: https://www.freeimages.com/photo/signature-sticker-1239475

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3 Replies to “Informed consent and the ethics of technology”

  1. 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.

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