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A series of unfortunate experiments


GIVEN its government’s recent actions, New Zealand may seem an unlikely nation to look to for effective ways to combat State tyranny. A week or so ago, after just three symptomless people tested positive for Covid-19, the NZ government closed Auckland, its biggest city, forced citizens to stay at home and set up ‘border patrols’ to police free movement. The economic cost of this fanatical overreaction is estimated at almost NZ$100 million, or £50million.

This astounding decision was made by a handful of scientists, medical doctors and politicians who have rapidly become accustomed to doing whatever they want without consultation or consent. If they choose to lock down, they simply send a loud alarm and accompanying text to every mobile phone in the country and use the police to enforce their latest rules. 

But there is another New Zealand, a thoughtful, respectful nation which painstakingly created detailed regulations and social structures designed to protect human rights, essential privacies, informed consent and compassionate care. 

The genesis for this determined initiative was a flawed experiment on nearly 1,000 unsuspecting women over almost twenty years. The research, which came to be known as the ‘Unfortunate Experiment’, was a study of a condition called cervical carcinoma in situ (CIS). It was run by oncology consultant Dr Herbert Green, who was convinced CIS did not progress to cervical cancer.

Green began his investigation in 1965, aiming to prove his hypothesis. Patients under 35 who presented with smear tests indicating CIS were not told they had a disease and not offered any treatment. 

At first it seemed Green’s guess might be correct, but as time passed more and more of the vulnerable group developed cancer. In 1984, soon after Green retired, it was found that the cohort with abnormal cytology (131 women) were 25 times more likely to be diagnosed with cervical cancer than those who had normal results. 

Such was the medical culture at the time that Green’s research remained shrouded in secrecy until two investigative journalists wrote a seminal article in Metro magazine in 1987 describing how the women had been used as research subjects with no opportunity to opt out.  

The government commissioned a full-scale Inquiry, resulting in the Cartwright Report which recommended systemic changes including a Health and Disability Commission, a patient advocacy service and a post of Senior Lecturer in Medical Ethics at Auckland Medical School. Most significantly, the report recommended a network of regional ethics committees to focus on the protection of patients. These were to be independent of hospitals and half of the members would be lay people. Today, any research or novel intervention on one or more individuals must be submitted to one of these committees for ethical approval before it can proceed.

Given this history, and the massive efforts made by successive NZ governments to strengthen citizens’ rights, it is unspeakably staggering that public involvement has been so nonchalantly dismissed to prevent the spread of a largely harmless virus. 

In all Western democracies, informed consent is a legal and ethical requirement for any act on an individual. Of course it is impossible to gain individual consent to policies that affect populations. But this is absolutely no reason to abandon ethical standards for interventions on groups. 

Public health practitioners and their colleagues have been able to ‘get away with’ so many outrageous impositions on the public because they see no need to involve individuals on the receiving end of their ill-conceived experiments. Unlike other doctors they do not care directly for patients so ethical concepts such as patient-centred care, shared decision-making, family engagement and informed consent seem to have no relevance in their strange, detached culture.

‘Public health experts’ think of themselves as objective scientists working with generalised models and statistics rather than affecting real people. Hard as it is to believe, they forget we experience lockdowns, social distancing, masks, bans on seeing loved ones, and amateurish, coercive propaganda not as ‘the public’, but as vulnerable human beings, each with unique lives. 

As we seek ways to prevent the ethical travesties of the past year ever happening again, I suggest we take a lead from the real New Zealand. I suggest we implement informed consent by proxy for groups of citizens, by establishing balanced, multi-disciplinary ethics committees charged with scrutinising every aspect and every implication of public health measures proposed by advisory groups like Sage, with statutory power to amend or veto those measures if they breach ethical norms.

As naïve as it may seem, there are two reasons why requiring formal ethical scrutiny of lockdowns and other assaults on public freedoms is worth a try. Firstly, the scientists and other academics who make up government advisory committees are typically members of universities and other institutions where they would routinely expect any research or teaching innovation to be subject to ethical approval. Not only is this normal to them, but it is possible that it would prove more palatable than present arrangements since it would make them less personally exposed.

Second, though the supine UK Labour Party refuses to vote against repeated assaults on basic freedoms, selfishly hoping to bank votes from a credulous public, there is a chance that enough of its MPs might join with conservative libertarians to vote for a positive affirmation of ethics. This would not mean voting against government policy, but it would mean voting for the robust ‘checks and balances’ system we have been so sorely lacking.

Just as Dr Green’s Unfortunate Experiment prompted a radical reform of how individuals were treated by a medical system they believed was there to help them, so this pragmatic reaction to Western governments’ many Unfortunate Experiments on their  citizens could help us permanently reclaim the human rights we thought we already had.

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David Seedhouse
David Seedhouse
David Seedhouse is the creator of Our Decision Too.

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