The legitimacy of any technical system rests on the continued trust of its users. A missing governance requirement is a legal duty of candour.
The message is clear: we must rebuild our systems of trust and governance.
Last summer I had the pleasure of meeting Thelma Parker, who has made it her mission and passion to communicate the need for a statutory Duty of Candour for public professions like doctors, coroners, and police.
I believe this issue has far wider significance than the healthcare misfeasance from which it has arisen. Indeed, it is an essential governance prerequisite if the Internet of Things is to be prevented from becoming a tyrannical open prison for people.
To make the point clear, I would like to drag out of obscurity one harrowing 1970s case of medical misconduct, and draw the wider lessons from it that we all need to take heed of. The issue is neither isolated nor historical: it is widespread and contemporary.
The power others have over us
In life, there are many choices to be made. Some we make for ourselves, and others are made for us. When others do so, we vest in them the power of trust, which makes us vulnerable.
Our ideal is that the other people will act in our best interest, making choices for us as if they were for their own sake. Conversely, we experience horror when our interests are abandoned or contradicted by those we trusted, and we (or those we hold dear) are harmed due to negligence or wickedness.
We are mortal creatures. Those in the medical profession unavoidably can dispense demise through the choices they make on our behalf. This need not be negligent: it is inherently an imprecise activity, even with the best of intentions and skilled efforts. Nonetheless, it can be due to serious wrongdoing, as the unnecessary and awful death of young Helenor Bye shows.
I would like to share this important case study in the systemic and institutional betrayal of trust.
The disturbing case of Helenor Bye
Thelma has authored a well-written book on the case (available as a PDF download), and so I will be brief in recounting the key points. Helenor was 12 years old in 1977, when she went into hospital with a urinary tract infection. The doctor decided to conduct what was effectively an unlicensed medical trial upon her, giving her drugs for epilepsy (!) that were only licensed and tested for adult use.
The dose was exceptionally high, and initiated a painful and prolonged cycle of descent into death. At every step the medical staff doubled down on their initial diagnostic and prescription error. One of the disturbing parts of this awful tale is how the courts were used to override the wishes of her parents, who could see the damage that the treatment was causing to her.
Helenor entered the hospital with a minor infection. She left this world incontinent, wasted away and brain damaged. Nobody dared to challenge the authority of the doctor, despite his reputation among colleagues for being cruel and controlling.
A conspiracy fact: the collusion to cover-up
The cover-up was immediate and extensive:
- The post mortem delivered a fraudulent verdict on false evidence.
- The doctor, police and coroner all lied and/or perjured themselves.
- There was a highly selective calling of witnesses.
- Later genetic tests were faked.
I am parent myself, and my younger daughter faced multiple surgeries as a newborn. These were performed competently and carefully, and it was a trauma nonetheless. I wouldn’t wish the experience upon anybody. How the parents and younger brother of Helenor have coped with this criminal conspiracy is beyond me.
This could be your child. It could even be you. If that is a fate you wish to avoid, then you need to understand the systemic nature of this failure. It is not merely one “bad apple” performing an inconceivable act that could not be foreseen. Rather, we are dealing with a system whose core purpose has become misdirected.
A copy of the book on Helenor’s awful experience and the crimes that followed.
A systemic trashing of trust
Infamously, medicine can attract psychopaths, as has been shown recently in the UK with the criminal conviction of Dr Ian Paterson. He performed hundredsof unnecessary operations on women to satisfy his disordered desire for control. Each harmful procedure was, I presume, the first Dr Paterson had performed on each patient, so they had no reason to distrust his diagnosis and intervention.
In medicine in the UK, we also saw the case of prolific serial killer Dr Harold Shipman, who murdered hundreds of his patients for personal gratification and gain. His patients were trusting in the institution he belonged to, and of the Hippocratic ethics he had taken an oath to uphold. Furthermore, they were trusting in the systems of governance, expecting that they would identify wrongful behaviour, and correct it in a timely manner.
Note how trust is a different matter from confidence: with the former, we have no prior experience to go on, whereas the latter is built upon an established pattern of relating and behaviour. (If you wish to explore this different further, I recommend The Problem of Trust by Adam Seligman.)
The death tolls we are talking about are here the equivalents of significant national disasters. When they become “business as usual”, then systems like the UK’s National Health Service can mutate into a “national harm system”, with the welfare of millions at risk.
A corrupted industry serves as a warning
It has become painfully evident that many institutions in modern life have become “pathocracies”, infected by psychopathic doctrines, and dominated by sociopathic characters. Medicine is an example of an industry that has become corrupted, since the financial incentives are increasingly to maximise “sickcare” rather than lifelong wellness.
There are many serious threats to our health and welfare, for example:
- From the intensive research of friends and colleagues, it seems that cholesterol has been wrongly demonised, and the procedure for prescribing statins is shockingly defective.
- The role of fat versus carbohydrate in a heathy diet has been scandalously misrepresented, and diabetics are being given absolutely inappropriate dietary advice.
- The ‘end of life’ palliative process defined by the innocently-named ‘Liverpool care pathway’ has become a euphemism for silent euthanasia and excuse for systematic murder of the elderly and unwell.
- At the more extreme end, we hear legion stories of organ harvesting that invoke the darkest possible of horrors; there’s too much evidence to dismiss it as paranoid rumour-mongering.
Harm caused by medical interventions — known as iatrogenesis — is the third leading cause of death and injury in the US, behind heart disease and cancer. Whatever you believe about homeopathy (personally I prefer dark chocolate as a natural remedy) it is a 100% sure-fire cure against harm by conventional medicine!
It has often been said that there is no science in medicine, and indeed it is frequently the opposite of science. The way that an innocent child (like Helenor Bye) is falsely seen as a small adult, for instance, is merely one example of a systematic failure: psychology has a reproducibility crisis, pharmacology an outright corruption one.
We are in all in a lot of trouble, whether we know it or acknowledge it. The facts speak for themselves.
A dangerous alliance of state and commercial power
It is no longer safe for the individual to merely rely upon institutional reassurances of those in positions of authority that our welfare is dear to their heart. Money and greed reign, and we need to deal with it. We unavoidably need to rebalance the power between institution and individual: the individual must have meaningful recourse when the institution acts in its own interest rather than ours.
The reality of many professions is a long way from the TV dramas and childhood games we play. The existence of a “medical mafia” is not an isolated industry case study, but merely a more visible one. As we come to give machines artificial intelligence without a corresponding conscience, the same pattern will inevitably play out in each “smart” (but absolutely amoral) technological system.
The problem is worsened when we see a conjunction of the power of the state with both corporate power (as with health insurance, or pharmaceuticals). This is exacerbated when allied to professional monopolies through licensing (as with medicine). To use a word that is currently in vogue, albeit often debased, the disaster we collectively face is a fascistic domination of the individual by institutional power.
The specific systems failure is a lack of individual accountability for poor outcomes. In these amoral systems of power, it is abstract group names, or even physical buildings, that are allocated the blame. Individuals and teams do not suffer repercussions for their wrongful behaviour.
This can be seen, for example, with the Hillsborough disaster in the UK, where 96 fans of Liverpool football club died through no fault of their own. An alliance of corrupt media, legal, political and medical professionals held back justice for over a quarter of a century, and it is still an ongoing struggle for resolution and restitution for the harm they have caused.
Thelma Parker at her home in southern England
A paradigm change: moral by design
The key to preventing these scandalous outcomes is to establish a trusted baseline of truth. What was done, when, by who, and to whom?
There are learning systems like aviation safety that have a spectacular record of success. Every aircraft has a black box flight recorder which captures the key flight parameters and cockpit conversation. This contributes to the understanding of the root causes of every failure.
The transport safety board have the power to investigate and make recommendations, but not to punish or enforce change. This reduces the danger of conspiracy and subversion to hide the truth.
As a result, the process of flying gets safer with every crash. It is somewhat paradoxical, as we don’t wish for there to be any crashes. Yet by acknowledging them as an ordinary, albeit tragic, byproduct of an imperfect world, we gain wisdom that benefits us all — forever. This is called an “antifragile” scheme, and is a necessary precondition for long-term systemic survival.
The trick pulled by mass-murderer Dr Harold Shipman was to falsify records to cover his trail by subverting the record-keeping process. In the case of Helenor Bye, the Chief Executive of the hospital inappropriately held on to records and manipulated the case history. This is a familiar and standard operating procedure in tyrannies: the Soviets perfected the falsification of history to get away with murder.
The accountable and ethical use of power
The human motives of domination, control, profit, greed, ego, and power will not be going away any time soon. We need to accept them as an immutable and intrinsic part of our existence. Medical and moral “crashes” are ordinary events, not something totally unexpected that cannot be planned for. If we are to learn, we need the evidence of what went wrong and why.
This is where a personal and statutory duty of candour for public professions comes in.
Firstly, it is a duty to maintain truth: duty of candour. The “black box” needs to ensure that a record is truly a record, and can be non-repudiated and audited. In the age of blockchain, this should not be a big ask.
Secondly, it is personal. The individual is liable, not the institution. It means that the individuals concerned have “skin in the game”, so that they understand there can and will be consequences for engaging in subterfuge and conspiracies.
Lastly, it is statutory. There is the full force of the law behind it, and it cannot be taken away in consumer contract terms, or negotiated away by unions like the medical associations. There also has to be the prospect of prison to motivate sociopaths to submit to its strictures.
Helenor’s parents faced the accusation of being over-protective and medically uneducated. As she was the first recorded death from sodium valproate, it was hitherto presumed to be safe. By quickly forcing the truth to surface, a personal and statutory duty of candour could have both prevented the suppression of parental feedback on Helenor’s welfare, and the societal feedback on the drug’s safety.
Implications for the Internet of Things
An activity like flying, whilst life-and-death in terms of safety, is something that is done with us, as it does not transform our person. In contrast, medicine by its nature is done to us. Hence its institutional failures are interesting and instructive in the context of the Internet of Things.
As we move to a world of pervasive sensors, control systems and machine learning, we are going to embed ourselves into a pervasive “Decision Matrix”. The controls that it shifts in and on our bodies, as well as in our lived environment, will continually be doing things both with and to us.
As a result, the kind of life-or-death choices that doctors make a few times in our lives will instead become a constant stream of small interventions towards satisfaction or suffering.
This “satnav for life satisfaction” can act in your own interest, or manipulate you in someone else’s interest. Companies like Google and Facebook make money today because they manipulate your attention away from what you intended to see, in order to serve someone else’s interest. First steps are fateful, and this is not a good beginning.
The hypertext Web that fuelled Google’s rise is built on today’s prototype and problematic Internet. The future hypersense Decision Matrix will be built upon an intimate and industrialised replacement for the Internet. The “Internet of Things” is merely a metaphor for the transition zone between these paths as computing crawls out of the mainframe room into every nook of the world.
Take charge of your own destiny
We are in a period of historical turmoil. Venkatesh Rao has memorably described it as “history going supersonic”, with the tumult of change overwhelming our past institutions and intuitions. It is easy to feel disorientated. Still, the future is always malleable. We have meaningful choices over what kind of world those who follow us will inherit, and the governance structures it manifests.
This means constructing new maps to navigate high-speed life in a fragmenting society. The onus is on each of us to become cartographers and navigators of the unknown. We have to accept that the responsibility is upon us to educate ourselves, and take charge of navigating our own “life craft”, as well as “spaceship Earth”.
The culture we live in is highly masculinised, rewarding domination and competition, and denigrating nature and nurture. The idiotic influence of economics places no value on the biosphere that supports all life, for instance. Our media-driven consumer culture is corrupted and counterfeit, with few redeeming human values.
If we wish a different outcome, then we need to do something different. The biggest influence we have is to tackle root causes. A key one is the suppression of systemic learning that exists today in a “cover-up culture”. We instead need to specifically encourage and engineer positive ethical outcomes.
A personal and statutory Duty of Candour can turn a situation of compounding errors into a learning opportunity that benefits all of society today, and all societies that come tomorrow. I strongly commend it as a core governance principle for the future of the Internet of Things.
Thelma has raised a little-noticed matter of great importance. I am sure Helenor’s bereaved family would absolutely insist on it being enacted. After all, Helenor herself isn’t here to ask.
The best I am presently able to suggest is:
- Read this two page PDF article on “What to ask of your MP”.
- Make an appointment with your MP to raise your concern. Your investment of time is a signal that this issue matters.
- You may also wish to contact the former Bishop of Liverpool, The Right Reverend James Jones KBE, as suggested in the article.
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