A Human-Centered Approach to Health Innovations: Reconciling Intellectual Property with Human Rights – edited by Lisa Biersay, Thomas Pogge and Peter K. Yu

Health is a special good in that it is not merely a means that enables us to have and do more of what we want, but also profoundly affects who we are: our wants and hopes, how we feel and relate to others. The word “human-centered” is meant as a reminder that the essays in this volume are ultimately about human lives at risk of being shattered or distorted by disease, blighted by the loss of a family member or close friend, or darkened by health-related anxieties. In good health, human beings can be sources of immense joy and creativity; poor health may reduce us to dreary despair.

The uniqueness of health should inform how we think about and shape the health sector, how we practice health care, and how we educate its practitioners. This is in part about the cost-effective achievement of outcomes, importantly including the human right to health. But it is fundamentally also about human attitudes and relations, about being mindful that our practices and decisions profoundly affect human beings who each have only one life to live, who long for the chance to live to the fullest and to be joyful and productive.

To be sure, health care is also a business that must be sustainable, must husband scarce resources, and often makes very painful choices. But health care is fundamentally a field in which we relate as human beings, in which our humanity—or lack thereof—comes to the fore: empathy, compassion, solidarity, and meaning. An important measure of moral progress is how we treat our sick, referring here to not merely how we treat them medically but also the care and respect we show their fragile dignity. More than parliaments, universities, and museums, our health care system is a measure of our civilization.

It is in this spirit that the contributors to this volume are joining some familiar debates in law, philosophy, and economics. These authors want to offer not merely legal analysis or even technical improvements but also to inspire policy makers and the public to recognize the special place of the health care sector and the ways in which its design expresses how we conceive of ourselves as human beings. An important strand of this endeavor is cosmopolitan. Our vulnerability to the same diseases, including infectious ones that can spread around the world, is a powerful reminder of our deeply shared humanity, which is so often obscured by our diversities of nation, race, language, faith, lifestyle, and politics. Across all these divides, we can immediately relate to others’ encounters with disease, can feel what they feel, and can identify with their pains, fears, and hopes. Health is a truly universal value, comprehended and cherished by all—a value that can bring us together in the endeavor to enable all human beings everywhere to enjoy this most essential precondition of human flourishing.

In the health sector, uniquely, many are committed to such an ethos of shared humanity, willing to serve humankind and working to transform all health care worldwide in this spirit. But there are strong headwinds as well, notably from profit-focused investors and power-focused politicians. The health sector is a crucial battleground in the struggle for a safe and inclusive human future, the most promising starting point for the humanization of humanity and for the gradual achievement of a world of justice, peace, and universal solidarity. Making global progress together in this sector—notably in regard to how we develop and share relevant innovations—would build trust and mutual respect toward making progress in others. If we fail in health, we are likely to remain imprisoned in a world of prudential bargaining with violence as an ever-present resort.

This interdisciplinary volume brings together health, human rights, intellectual property (IP), legal and policy experts from around the world to advance a human-centered approach to health innovations. By exploring how this approach can alleviate or resolve problematic trade-offs in the health and pharmaceutical fields, the project aims to enrich the human rights debate and to formulate new innovation models and practices that would better realize the right to health and other relevant human rights.

The human rights most pertinent to this book project are the right to life, right to health, right to science, right to food and right to education. Relevant human rights instruments include the Universal Declaration of Human Rights; the International Covenant on Economic, Social and Cultural Rights; the International Convention on the Elimination of All Forms of Racial Discrimination; the Convention on the Elimination of All Forms of Discrimination against Women; regional human rights instruments, such as the European Social Charter, the African Charter on Human and Peoples’ Rights, the Additional Protocol to the American Convention on Human Rights in the Area of Economic, Social and Cultural Rights; as well as domestic constitutions and laws. We also welcome discussions on human rights grounded in moral philosophy. Intellectual property instruments encompass the Agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPS) of the World Trade Organization, treaties administered by the World Intellectual Property Organization, TRIPS-plus bilateral, regional and plurilateral trade and investment agreements, and domestic and regional intellectual property laws.

Although the book does not focus on the COVID-19 pandemic, it is particularly timely in view of the wide devastation and disruption caused by the pandemic and our urgent need to develop fresh perspectives at the intersection of intellectual property, human rights and public health. Contributions to this volume will address the following questions:

1. Taking a human-centered approach, how can intellectual property law and policy be redesigned to better realize the right to health and other relevant human rights?
2. In what concrete ways can we make the current proprietary models and innovation practices in the health and pharmaceutical fields more human-centered?
3. How can we design an accountability framework to promote a human-centered approach to intellectual property policymaking?

The book consists of fifteen chapters and an introduction. It will be about 120,000 words in length. The editors intend to publish this project under an open access arrangement.

The target delivery of the manuscript is spring 2023, with plans to have a book launch (or pre-launch) around the 75th anniversary of the Universal Declaration of Human Rights (UDHR) on 10 December 2023. In making these plans, the editors have taken into consideration the usual production timeframe of six to nine months. Combined with open access, the launch and related public events will make the book reach a wide global audience.

To improve the overall quality and coherence of the manuscript, contributors workshopped their chapters at Yale University on 29–30 October 2022. The workshop was jointly organized by Yale’s Global Justice Program and the Center for Law and Intellectual Property at Texas A&M University.