COVID-19 and the Ethics of Data Sharing

Verisimilitude: The Law, Policy and Ethics of Covid-19

There is an excellent article in The New Yorker (17 August 2020) on, “How China Controlled the Virus: Teaching and Learning during the pandemic,” by Peter Hessler based on his experience as a teacher of non-fiction writing in Chengdu University. As part of that article, he provided some insight on how China handled the problem of information sharing in managing the pandemic.

China – like Singapore, Vietnam, Taiwan and New Zealand – had an excellent record in handling the virus. The country may to some degree not have been fully transparent in sharing information about the virus in early January, but that was certainly not the pattern by early February when the spread of the virus was first declared a pandemic.  It is difficult to assess to what degree the Chinese policy of data management effected the excellent record China exhibited in controlling the virus but it undoubtedly played a very important role.

It may or may not be true that, “Current, timely, and complete epidemiological data are an absolutely necessary, but not sufficient, precursor to developing an effective response to the pandemic.” (Amir Attaran* and Adam R. Houston, “Pandemic Data Sharing: How the Canadian Constitution Has Turned into a Suicide Pact,” Verisimilitude, Chapter A-5, 91) But China’s experiencer tends to support such an interpretation.

China’s main strategy relied on a total and complete lockdown by the central state and the provinces whenever and wherever an outbreak was detected. Further, using widespread and quick testing, anyone with a positive result was whisked off to be quarantined in a government-run or supervised centre for a minimum of fourteen days. The same was true of all travellers from abroad. Other than returning Chinese citizens, China closed its gates to virtually all foreigners.

When a case was detected, an army of tracers had been trained and a team was sent to track all contacts and contacts of contacts. The team was immediately notified of results of tests and, whatever the time of day or night, it had a maximum of eight hours to complete its tracing. The action had to be decisive. The reporting had to be very detailed. And the whole operation had to be highly disciplined. Clearly the Chinese placed an extraordinary emphasis on data gathering.

Further, the data gathering was highly centralized. At its peak, there were 400,000 to almost half a million contact tracers who worked under the authority and direction of the Chinese Centre for Disease Control with about 125 tracers as a median assigned to each of the 3,000 disease control districts within the country. However, in Wuhan alone, there were ten thousand tracers.

If a tracer missed a case after knocking on doors and the virus spread as a result, the tracer was called in, reprimanded, and subjected to a program of “re-education.” There was a feedback loop built into the system when it concerned this basic information. At the same time, the issue of the distribution of masks, of distancing, of limiting the size of group gatherings were all left to local authorities. There was a clear division of responsibilities between comprehensive data gathering and management of cases and operational management to minimize spread.

One might have thought that China, with all its software programmers, might have come up with a high-tech model of doing tracing. In fact, a number were proposed. Tenent received a proposal to correlate where returning students came from, the routes they used for return and incidence of positive cases. Another initiative combined G.P.S. data and artificial intelligence to send messages to mobile phones alerting an individual if he or she were in close proximity to a person who tested positive.

But neither these nor other high-tech models were ever fully developed or deployed. Instead, old fashion door knocking, and interviews were the primary method, with initial information fed to the disease control centres by neighbourhood committees. Community watchfulness (social spying ???) and notifying authorities were considered ethically acceptable. Hi-tech methods that endangered rights to privacy were, surprisingly to a Western observer, evidently rejected precisely on protection of privacy grounds.

The results were spectacular. While the United States up until two days ago reported over a half million cases out of a world total of twenty million, half of that total in the last month-and-a-half, China has kept its total case load down to less than 85,000. Further, since mid-March, the number of new cases has been very low. When there have been several sporadic outbreaks, as in the Beijing wholesale food market, they were very quickly brought under complete control by strict lockdown measures. Out of almost three quarter of a million deaths worldwide until now, 166,500 have been in the U.S.A. There have been less than 4,700 in China. By the sixth week of the official pandemic, American deaths exceeded that of the number of Chinese deaths and by week fifteen, America reported twenty times the number of deaths. The differences just became wider and wider.

Current, correct and comprehensive data collection on cases, contacts and community spread were requisites. If America suffered from chaotic leadership at the centre that just as often undermined the efforts of local officials, Canada was not that much better. “(N)early two decades after data sharing proved a catastrophic failure in the 2003 SARS epidemic, epidemiological data still are not shared between the provinces and the federal government.” Why? “This is largely due to a baseless and erroneous belief that health falls purely within the jurisdiction of the provinces, despite the Supreme Court of Canada’s clear conclusions to the contrary, which has misled Canada to rely on voluntary data sharing agreements with the provinces that are not merely ineffective, but actually inhibit data sharing.”

Canada lacks a centralized authority to ensure the comprehensive collection of basic data and the administrative operations to make the collection complete and accurate. Under the Statistics Act as well as the legislation governing the Public Health Agency of Canada, the central government has full authority to collect that data in a timely manner. America chose a chaotic system. Canada chose a quasi-anarchic system with significantly better results than the United States, but much worse than those of China. “The choice is not between order and liberty. It is between liberty with order and anarchy without either.” (p. 92)

According to the authors of the chapter on the ethics of data sharing in Verisimilitude, “The most fundamental problem is that epidemic responses are handicapped by a mythological, schismatic, self-destructive view of federalism, which endures despite being flagrantly wrong.” Though federal/provincial relations are indeed a complicating factor, I do not believe it is the core problem. Instead, Canada, whether on the provincial or federal level, has not exhibited a disciplined determination to put in place the means to collect the data and effectively control the disease. That should be centralized and complete with a minimum of loopholes. Operational mechanisms to mitigate spread – in contrast to controlling it – can be left to provincial and local authorities.

Where comprehensive lockdowns were called for in Canada, moderate lockdowns were instead chosen. There was no determination to crush the pandemic. Certainly, the reluctance of provinces to share data or to do so only as it suited each province, may have been a factor, but it could have easily been overcome if the federal government had opted for more extensive closure methods correlated with more comprehensive methods of collecting and verifying data. However, in the false illusion of protecting individual rights, the federal government held back, not as much as President Trump, but enough to ensure the pandemic remained a prevailing though reduced threat.

The chapter documents the history of Canadians acting with one hand tied behind its back with very negative consequences for public health. The authors argue that, “There is no uniformity in the quarantine or physical distancing rules of provinces,” but, as the China case demonstrates, the localization of such mitigating factors is relatively inconsequential. On the other hand, comprehensive and uniform programs for screening are critical. So are programs for tracing. For these activities to be effective, they did not need so much to be well coordinated as to be delivered effectively and comprehensively by a central authority.

When “the World Health Organization (WHO) demanded epidemiological data from Canada about the scope of the epidemic, particularly in Toronto. Canada had no way to fulfil this demand, because a jurisdictional fight broke out and Ontario refused to share its epidemiological data with Health Canada. So little sharing occurred that Health Canada had to glean data from Ontario’s press conferences!” But the problem was not that provinces should share data with the federal government, but that the federal government must assume the responsibility for both collecting the data and controlling and squashing the spread.

“If a greater spirit of federal-provincial cooperation is not forthcoming in respect of public health protection, Ontario and the rest of Canada will be at greater risk from infectious disease and will look like fools in the international community.” But therein lies the problem – a reliance of coordination and cooperation between levels of government rather than disciplined and comprehensive leadership from the centre to which citizens are encouraged to assume responsibilities themselves.

As the article notes, international law demands such behaviour on the part of the central government. “Canada must share epidemiological information with WHO, including: … clinical descriptions, laboratory results, sources and type of risk, numbers of human cases and deaths, conditions affecting the spread of the disease and the health measures employed.” The issue must not boil down to voluntary interjurisdictional sharing between provinces and territories and the federal levels, but federal initiative and action in the documentation of epidemic diseases and the determination to erase all new cases, to which the collection of key information on cases and spread is critical. Canada follows the lead of the U.S., though in not nearly as extreme a form, in far too much respect for voluntarism and too little reliance on responsibility and discipline. The authors are correct. What is required is “mandatory federal law—not just failing, voluntary agreements.”

This is both legally permissible as well as an ethical imperative. “The Public Health Agency of Canada Act permits the Governor in Council to make regulations respecting ‘the collection, analysis, interpretation, publication and distribution of information relating to public health,’ subject to parts of the Department of Health Act, and in turn the Statistics Act.” Mandatory scientific and comprehensive testing and tracing are ethical obligations to save lives and prevent suffering.

Goodwill is not reliable. Will that is good is.

Late Breaking News – 13 August 2020

On Thursday last week, Canada’s international pandemic surveillance and risk assessment system issued its first alert since going silent on May 24, 2019. The alert focused on signs of human-to-human spread of a novel tick-borne bunya virus.
 
The move follows a recent Globe and Mail investigation that reveals how the Global Public Health Intelligence Network’s (GPHIN) main mandate was shelved in favour of a domestic focus amid changing government priorities. Before going silent last spring, the system sent more than 1,500 alerts about potential outbreaks including MERS, H1N1, avian flu and Ebola over the past decade. The Globe also reported that the Auditor-General intends to investigate lapses in decision-making that curtailed GPHIN’s capacity, leaving Canada unprepared for the COVID-19 outbreak.
 
But this restart was not accompanied by any official announcement, and the system is not yet back to its original capacity.

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