Gavel and stethoscope.

Symposium Conclusion: Health Justice: Engaging Critical Perspectives in Health Law & Policy

By Lindsay F. Wiley and Ruqaiijah Yearby

As our digital symposium on health justice comes to a close, we have much to be thankful for and inspired by. We are honored to provide a platform for contributions from scholars spanning multiple disciplines, perspectives, and aspects of health law and policy. Collectively with these contributors, we aim to define the contours of the health justice movement and debates within it, and to explore how scholars, activists, communities, and public health officials can work together to engage critical perspectives in health law and policy.

As we described in our symposium introduction, the questions we posed to contributors focused their work on four main themes: (1) subordination (including discrimination and poverty) is the root cause of health injustice, (2) subordination shapes health through multiple pathways, (3) health justice engages multiple kinds of experiences and expertise, and (4) health justice requires empowering communities, redressing harm, and reconstructing systems. Most of the contributions to this symposium cut across more than one of these themes, but we present them here in four broad categories.

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Mexico City 03082021 Feminist march against gender violence, March 8 in Mexico thousands of women protest in the streets for safety and better living conditions, using banners.

Strengthening Global and National Governance for Gender Equality in Health Emergencies

By Anna Coates

An international instrument on pandemic preparedness and response opens a much-needed space to highlight the centrality of gender inequality considerations in health emergency responses.

With an eye to inclusive governance, investment in gender expertise, and strengthening existing normative mechanisms and architecture for gender equality at global and national levels, a new intergovernmental instrument offers an opportunity for future health emergency preparedness and responses to meaningfully contribute to gender equality.

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Concept illustration of DNA and genes.

The Civil Rights Challenge to Gene Patenting

By Jorge L. Contreras

In 2009, the American Civil Liberties Union (ACLU) launched a unique lawsuit against Myriad Genetics, challenging fifteen claims of seven patents covering various aspects of the BRCA1/2 genes and their use in diagnosing risk for breast and ovarian cancer. In mounting this case, the ACLU assembled a coalition of lawyers, scientists, counselors, patients and advocates in an unprecedented challenge not only to one company’s patents, but the entire practice of gene patenting in America. And, against the odds, they won. In 2013, the U.S. Supreme Court ruled in Association for Molecular Pathology v. Myriad Genetics that naturally occurring DNA sequences are not patentable, a ruling that has had repercussions throughout the scientific community and the biotechnology industry.

In The Genome Defense: Inside the Epic Legal Battle to Determine Who Owns Your DNA (New York: Hachette/Algonquin, 2021), I describe the long road that led to this unlikely Supreme Court victory. It began in 2003 when the ACLU hired its first science advisor, a Berkeley-based cellist and non-profit organizer named Tania Simoncelli. At the ACLU, Simoncelli’s job was to identify science-related issues that the ACLU could do something about, from DNA fingerprinting to functional MRI brain imaging. A couple of years into the role, Simoncelli mentioned gene patenting to Chris Hansen, a veteran ACLU litigator who had been involved in cases covering mental health to school desegregation to online porn. At first, Hansen didn’t believe her. How could a company patent something inside the human body? But Simoncelli persisted, showing him articles and statistics demonstrating that, by 2005, more than 20% of the human genome was covered by patents. The realization led to Hansen’s oft-quoted exclamation, “Who can we sue?”

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Many people together around the world. 3D Rendering.

The Pandemic Treaty as a Framework for Global Solidarity: Extraterritorial Human Rights Obligations in Global Health Governance

By Benjamin Mason Meier, Judith Bueno de Mesquita, and Sharifah Sekalala

Rising nationalism has presented obstacles to global solidarity in the COVID-19 pandemic response, undermining the realization of the right to health throughout the world.

These nationalist challenges raise an imperative to understand the evolving role of human rights in global health governance as a foundation to advance extraterritorial human rights obligations under global health law.

This contribution examines these extraterritorial obligations of assistance and cooperation, proposing human rights obligations to support global solidarity through the prospective pandemic treaty.

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Group of Diverse Kids Playing in a Field Together.

Health Justice is Within Our Reach

By Dayna Bowen Matthew

Health justice is the outcome when law protects against the unequal distribution of the basic needs that all humanity requires to be healthy. Angela Harris and Aysha Pamukcu define health justice in terms of ending the subordination and discrimination that produce health disparities.

I first saw and experienced the need for the work to achieve health justice as a child. I grew up in the South Bronx, insulated from the absence of health justice until the fourth grade, when I began attending private school. Before then, I had no idea that the racially, ethnically, and economically segregated society in which I lived, played, and attended school and church was any different than the society that existed unbeknownst to me outside of my zip code.

I crossed interstate highway exchanges daily as I walked to P.S. 93, oblivious to the fact that other kids did not breathe the exhaust fumes and toxins from nearby waste transfer stations that tainted the air where my mostly Black, Dominican, and Puerto Rican neighbors lived. I had no idea that clean, breathable air was inequitably distributed in this country by race.

It was not until I left the South Bronx to attend school in Riverdale that I realized other families had an array of housing options to choose from that were different than mine. In fourth grade, when my family began voluntarily bussing me to private school, I learned that the housing available to families extended beyond the racially segregated shotgun row house I lived in, the stinky, dimly lit apartment buildings on my corner or “the projects” where my grandparents lived in Harlem. Who knew there were sprawling homes atop manicured lawns and opulent apartments overlooking Central Park available throughout other parts of the city? Who knew that even modestly priced apartments could be located near green spaces, well-stocked grocery markets, and schools that prepared kids well for college? Not me. I had no idea until I began to see that decent, clean, affordable housing, and resource-rich neighborhoods are inequitably distributed by race and ethnicity in America.

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WASHINGTON, DC - OCT. 8, 2019: Rally for LGBTQ rights outside Supreme Court as Justices hear oral arguments in three cases dealing with discrimination in the workplace because of sexual orientation.

LGBTQ Health Equity and Health Justice

By Heather Walter-McCabe

LGBTQ communities experience health inequities compared to heterosexual and cisgender peers. The health justice framework allows advocates to move the work upstream to the root causes of the problems, rather than placing a band-aid on the resultant consequences once the harm is caused.

It is not enough to provide individual treatment for the harm caused by stigma and bias. Health justice is a crucial means of ensuring that health care is equitable and that impacted communities are involved in policy and system advocacy.

The health justice framework, with its emphasis on community involvement in structural and governmental responses to systems-level transformation, must guide work in the area of LGBTQ health equity.

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Finger pressing Apple Maps button on the Apple CarPlay main screen in modern car dashboard.

Addressing Distracted Driving: The Problem is Bigger than Texting

By Jack Becker

Distracted driving is deadly.

In 2019, 8.7% of all motor vehicle traffic fatalities involved a distracted driver, totaling 3,142 fatalities. And hundreds of thousands more are injured due to distracted drivers each year.

So, what are the solutions? Anti-drunk driving initiatives may provide some valuable insights.

The share of motor vehicle fatalities involving alcohol impairment has declined from 41% in 1985 to 28% in 2019.

Much of this decrease is attributable to laws and law enforcement. When the FY 2001 Transportation Appropriations bill included a provision setting the national impaired driving standard at .08 BAC, it was touted as saving an estimated 500 lives per year. Every state has some form of drunk driving law, and 38 states have open container laws, and these laws seem to impact fatalities.

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Global connections concept illustration.

21st Century Lawmaking in an Interdependent World

By Caroline E. Foster

A new pandemic instrument should explicitly embrace the three emerging global regulatory standards of due diligence, due regard, and regulatory coherence.

These standards sit at the interface between national and international law to help functionally align the two in ways that will protect and advance shared and competing interests in an interdependent world.

The standards require nations to exercise their regulatory power in certain ways, including demonstrating (i) due regard for the international legal rights and interests of others, (ii) due diligence in the prevention of harm to other States, and (iii) regulatory coherence between governmental measures and their objectives. These international law standards are already implicit in and given effect by the operation of WHO’s current International Health Regulations (IHR) of 2005.

As we develop new pandemic instruments, their presence should be made increasingly explicit. Giving a stronger profile to the standards will help generate new political impetus and new legal bases for implementation of world health law, and fit it to 21st century application.

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Gloved hands hold medical face mask with WHO (World Health Organization) flag.

Strengthening International Legal Authorities to Advance Global Health Security

By Lawrence O. Gostin

The COVID-19 pandemic has exposed marked limitations in the International Health Regulations (IHR) and constrained authorities of the World Health Organization (WHO). With a rising imperative to advance pandemic preparedness and response, more than twenty heads of government proposed a new pandemic treaty. This prospective pandemic treaty offers a pathway to develop innovative international legal obligations, strengthening core capacities, good governance, and compliance mechanisms to prepare for novel outbreaks with pandemic potential.

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Pulse oximeter used to measure pulse rate and oxygen levels in use on a person's finger.

‘I Can’t Breathe’: Racism in Medical Technology

By Aziza Ahmed

When Black Lives Matters (BLM) activists say “I can’t breathe,” they are acknowledging that breathing is not simply biological — it is enabled or disabled by law and politics. They are right.

In fact, the legal and political environment shapes and legitimates the very tools we use to monitor our capacity to breathe.

The racial justice uprisings and the COVID-19 pandemic have inspired advocates, scholars, and researchers to examine the assumptions about race that have embedded themselves into these tools — the medical technologies we use to measure if, and how, a person is breathing and absorbing oxygen.

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