gavel and old papers on grey background.

Human Rights Principles in Public Health Emergencies: From the Siracusa Principles to COVID-19 and Beyond

By Eric A. Friedman and Lawrence O. Gostin

In 1984, the United Nations Economic and Social Council (ECOSOC) adopted the Siracusa Principles, which state that restrictions on human rights must meet standards of legality, necessity, and proportionality. States must use the least restrictive means available when putting in place rights-restricting measures.

One of us (LG) was involved in the drafting of the Siracusa Principles, which have become the chief international instrument governing permissible human rights limitations during national emergencies. Yet when COVID-19 – the greatest health emergency in a century – devastated the world, the Siracusa Principles seemed unequal to the task – too narrow, including with their remit limited to civil and political rights, not sufficiently specific, and above all, without sufficient accountability.

During the pandemic phase of COVID-19, human rights violations were widespread and spanned the full gamut of rights: from arbitrary detentions and suppression of free expression, to violations of the right to health, failure to ensure sufficient food and other necessities during lockdowns, quarantines, and isolations, and woefully inadequate international cooperation and assistance, including discriminatory travel and trade restrictions.

Extensive abuses of human rights during the pandemic led international experts to draft the Principles and Guidelines on Human Rights and Public Health Emergencies (HR Principles). Firmly embedding these principles in international law and creating accountability will be critical for realizing the HR Principles’ potential.

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Doctor asking patient to fill out survey before medical treatment.

Key Considerations for Patient-Reported Outcome Measures

By Sharona Hoffman

Patient-reported outcome measures (PROMs) are questionnaires that patients fill out on tablets or other computers or devices. They ask patients to check boxes in answer to questions about their symptoms, treatment effects, and ability to function physically, emotionally, and socially. They thus may solicit very sensitive information about matters such as anxiety, depression, and sexual satisfaction. To illustrate, a query might be “in the past month, how often did you have a lot of trouble falling asleep,” and the patient is asked to check “never,” “rarely,” “sometimes,” “often,” or “always.”

PROM responses can be used for purposes of clinical care, research, quality improvement, Food and Drug Administration (FDA) approval of drugs and devices, and even insurance reimbursement. For example, insurers hypothetically could decide to decline coverage of particular treatments based on PROM responses indicating that many patients find them to be unhelpful.

I first became interested in patient-reported outcome measures because of an experience my husband had. Andy has Parkinson’s disease, and one of the neurologists he saw asked him to fill out a long questionnaire on a tablet computer before each appointment. This task was difficult for Andy because he had a hand tremor, and it was stressful because Andy worried that he would not have time to complete the survey before his appointment began. Moreover, Andy’s physician never referred to his responses and appeared never to look at them. Upon investigation, I found little to no analysis of PROMs in the legal literature, so Andy and I recently published a law review article about them.

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LOMBARDIA, ITALY - FEBRUARY 26, 2020: Empty hospital field tent for the first AID, a mobile medical unit of red cross for patient with Corona Virus. Camp room for people infected with an epidemic.

Non-State Actors and Public Health Emergencies

By Rossella De Falco

Strong, well-coordinated and resilient public health care services play a vital role in preventing and responding to public health crises. Under international human rights law, States have a positive, primary obligation to ensure that such health care services are of the highest possible quality and accessible to everyone, everywhere, and without discrimination.

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Making Explicit a Rights-Based Approach to Infodemic in a Public Health Emergency

By Calvin Wai-Loon Ho

With the mainstreaming of digital technology across many spheres of social life, infodemic management must be an integral part of public health emergency prevention, preparedness, response, and recovery.

While the Principles and Guidelines on Human Rights and Public Health Emergencies (the Principles) do not make explicit reference to infodemics, the application of digital technologies in response to a public health emergency is a clear concern. This article provides further elaboration and critique of the Principles and their treatment of this emergent phenomenon.

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Bill of Health - Globe and vaccine, covid vaccine

COVID-19 Showcased Failed Global Cooperation

By Kayum Ahmed, Julia Bleckner, and Kyle Knight

In mid-May, the World Health Organization officially declared  the “emergency” phase of the COVID-19 pandemic over. However, the deep wounds of the pandemic remain, compelling  those concerned about this pandemic and  future health emergencies to account for catastrophic failures by those in power. These reflections suggest that the public health crisis could have been addressed differently, both reducing COVID-19’s unprecedented magnitude of illness and death, and preserving human dignity.

The COVID-19 pandemic isn’t over, and the end of this pandemic’s emergency phase certainly doesn’t mean we accept the widely abysmal response as the model for the world’s reaction to the next one. Public health emergencies aren’t entirely preventable. We live in a complex world where health is increasingly affected by a changing climate, extraordinary levels of pollution, and inadequate preventive and responsive health services. Emergencies will happen. But when they do, responses that uphold human rights need to be the norm.

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Risograph clenched, raised fists with speech bubble and geometric shapes, trendy riso graph design.

Introduction to the Symposium: From Principles to Practice: Human Rights and Public Health Emergencies

By Roojin Habibi, Timothy Fish Hodgson, and Alicia Ely Yamin

Today, as the world transitions from living in the grips of a novel coronavirus to living with an entrenched, widespread infectious disease known as COVID-19, global appreciation for the human rights implications of public health crises are once again rapidly fading from view.

Against the backdrop of this burgeoning collective amnesia, a project to articulate the human rights norms relevant to public health emergencies led to the development of the 2023 Principles and Guidelines on Human Rights and Public Health Emergencies (the Principles).

This symposium gathers reflections from leading scholars, activists, jurists, and others from around the world with respect to the recently issued Principles.

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Mushrooms, capsules, and dropper bottle.

Psychedelics Are Cheap. Psychedelic Treatment Is Not.

By Vincent Joralemon

Psychedelics hold immense potential to address an array of conditions that are otherwise challenging to treat, but accessing these therapies can be costly, which means that potential benefits will be stratified along the lines of socioeconomic status.

This is an acute concern, because many with conditions that psychedelics may help to treat — such as post-traumatic stress disorder, postpartum depression, treatment-resistant depression, and alcohol use disorder — lack the resources to pay for effective health treatments.

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U.S. Supreme Court

Context Matters: Affirmative Action, Public Health, and the Use of Population-Level Data

By Wendy E. Parmet, Elaine Marshall & Alisa K. Lincoln

Last June, in Students for Fair Admissions (SFFA), the Supreme Court ruled that universities could not consider race in admitting students. In support of that decision, the Court dismissed the relevance of data about the varied experiences of racial groups, insisting that admissions decisions must be based solely on the experiences and merits of individual applicants. The Court’s rejection of group-level data evinces a critical misunderstanding about the uses and limits of such data that, if applied more broadly, portends troubling implications for health equity and health policy.

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Wooden blocks with symbol of social equality concept on blue background.

Building a Disability Organization Rooted in Disability Justice

By Dom Kelly

There’s a lot to say about the nonprofit sector and how it so often burns out, underpays, and devalues the humans who do the labor. There’s a pervasive narrative that this should just be accepted as a cost of doing good in the world. But for marginalized people who find themselves in this work for reasons that are connected to their identities, this kind of thinking ultimately pushes us out of the sector altogether.

Disability organizations are no exception to this.

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