EULAR Annual Congress

EULAR Annual Congress


Machado PM, van Laar JM. Is ethics in clinical management and research of Covid19 patients adequately addressed? Presented at EULAR 2021 Congress; June 2-6, 2021 (virtual meeting).

Disclosures: Machado and van Laar reported no relevant financial disclosures.
June 05, 2021
4 min read

Experts debate COVID-19's effect on individual, public health responsibilities


Machado PM, van Laar JM. Is ethics in clinical management and research of Covid19 patients adequately addressed? Presented at EULAR 2021 Congress; June 2-6, 2021 (virtual meeting).

Disclosures: Machado and van Laar reported no relevant financial disclosures.
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Balancing broad public health initiatives with the necessity of respecting individual choices and patient needs was at the heart of the best and worst aspects of the COVID-19 pandemic response, according to speakers at the EULAR 2021 Congress debate.

Pedro M. Machado, MD, PhD, associate professor in rheumatology and muscle diseases at University College London, presented the ontological side of the ethical argument, which emphasized the needs of the individual over broader public health concerns. Jacob M. van Laar, MD, professor in the department of rheumatology and clinical immunology at University Medical Center Utrecht in the Netherlands, addressed utilitarian concerns, which weighed public health more heavily.

“If you face a huge wave of tsunami you cannot take time to sit in your boat until the best decision comes up,” Jacob M. van Laar, MD, told attendees. “You have to act.” Source: Adobe Stock
Pedro M. Machado

“When you think about clinical research and when you think about doctors, they often develop an ethical view that is focused on individuals,” Machado said. “When you think of public health ethics, you think of the general population.”

COVID-19 forced clinicians, researchers and policymakers alike to answer this question, according to van Laar. “The question for COVID is how to maximize benefit for society as a whole while taking into account the interest of each and everyone,” he said. “That is the balance that has to be balanced. That’s the difficult one.”

Impact on Individuals

Machado stressed that despite this evident dichotomy, the needs of the individual vs. the needs of the public are not always on different sides of the equation. In short, serving the wider public can also have benefits for individuals. “But that is not always the case,” he said.

There has obviously been a “huge shift” in resource allocation and research initiatives toward COVID-19, according to Machado. “Resource distribution should be fair,” he argued.

The question is whether patients with COVID-19 should take priority — in the form of ICU bed space or ventilator usage — over patients with other acute and chronic conditions who require those resources, as well. “The invisible epidemic has been created, and that epidemic has been the neglect of chronic disease management during the COVID-19 pandemic,” Machado said.

In short, many individual patients with a broad range of conditions have experienced poor outcomes due to the pandemic response.

Thinking more broadly, Machado suggested that national and international budget decisions could have been considered more deeply before the resources were diverted to COVID-19. He suggested that because so much money was taken away from new projects, short-term research initiatives suffered. In addition, the capacity of individual research groups to conduct the type of longitudinal studies required to develop new treatments is also likely to suffer.

On the personal level, many researchers who have spent their careers thinking about one specific problem — from cardiovascular disease to cancer therapies — have had to stop working or retire because the funds to continue their work are no longer available.

“The harms of ignoring these public health interventions should not be ignored,” Machado said.

In closing, Machado suggested that care for individual patients with all diseases and conditions “should remain a primary concern” as the pandemic response continues. “Interventions in the context of COVID-19 need to take into account unintended consequences,” he said.

Focus on Public Health

Jacob M. van Laar

In his argument, van Laar described COVID-19 as a “tsunami of disaster on a global scale” that forced clinicians, researchers, policymakers and other interested parties to act first and consider the implications on individual patient outcomes later.

This swift action led to some things going well and some things going poorly in response to the pandemic, according to van Laar. One negative was the tendency of many high-level policymakers and politicians to ignore scientific evidence. Another was the lack of basic preparedness for such an event, despite decades-old warnings from global public health experts. On the positive side, van Laar highlighted the speed with which vaccines were developed and the rise of telehealth as a viable option for patients.

He placed this in the context of utilitarianism as a driver of decision-making at all levels.

For van Laar, utilitarianism is based solely on hard data, ideally showing the impact of any given decision on outcomes that could impact the greatest number of people. “It is a science-driven philosophy,” he said.

While van Laar acknowledged that it may be difficult to sort out which national and international decisions pertaining to the pandemic were based on data and which were based on other factors, he suggested that one primary reason may be at the heart of the world’s failures. “If politicians had observed utilitarianism in good detail, they should have taken into account the long-term consequences of COVID,” he said, suggesting that many politicians made decisions based on factors far removed from science and data. “So, the failure is not failure of utilitarianism, it is a failure of the application of it.”

One of the key failures was a lack of transparency, according to van Laar. If experts at the clinical and policy level are to make decisions based solely on data, the models they are using and the data they are inputting should be made available to the wider public, which has not always been the case in COVID-19.

Ultimately, on one point, van Laar was clear: the excess morbidity and mortality seen in the last 18 months came solely from COVID-19. For that reason, the decisions to divert resources toward the public health threat of the pandemic were warranted, despite the consequences they may have had on certain individuals and certain patient population subgroups.

“If you face a huge wave of tsunami, you cannot take time to sit in your boat until the best decision comes up,” he said. “You have to act.”