AAAS Science, Technology and Human Rights Conference 2020: Showcase

Genetic Surveillance of Uighurs in Xinjiang: Ethnicity, Sovereignty, Crime, and Human Rights

Morgan Steelman is the undergraduate student winner of the AAAS Science and Human Rights Coalition's 2020 Student Essay Competition.

Morgan Steelman, Princeton University

The International Survey of Human Rights

Sociologists studying human rights add to the empirical knowledge of human rights by integrating and building upon existing sociological frameworks. Hailing from social movement research, political sociology, development sociology, sociology of law, cultural sociology, and other subfields, these frameworks help scholars to understand the social underpinnings and social impacts of human rights treaties, declarations, laws, policies, and customs. In order to deepen sociological analysis of these and many other questions, it is essential to embark on a new project to gather and analyze data on how human rights values operate within and across societies. The ISHR, the International Survey of Human Rights, will serve as an empirical bedrock from which the sociology of human rights can flourish. The ISHR examines factors that shape individuals’ opinions of and experiences with human rights. Scholars need a deeper understanding of how human rights norms find expression in different societies - the ISHR will help build that understanding. The ISHR will incorporate modules on particular topics around human rights, including the human right to science. The primary objective of the ISHR is to investigate how and why opinions, beliefs, attitudes, and experiences vary internationally and cross- culturally regarding human rights. We will report here on the survey structure itself and preliminary findings from the US sample collected in early 2020, prior to the COVID-19 pandemic. Our ultimate objective is to eventually administer the ISHR to random samples of respondents from 44 countries. We have begun our research with this survey with a US-based sample, which we are currently analyzing. With funding and institutional support, we look forward to disseminating the survey more widely and over time.

Keri E. Iyall Smith, Associate Professor, Suffolk University
Brian K. Gran, Professor of Law, Case Western Reserve University
David L. Brunsma, Professor, Virginia Polytechnic Institute and State University

Networks for Human Rights Education: Infusion Strategies for Science and Technology

With the current pandemic, there have been pushes toward new teaching methodologies and practices emerging in virtual learning spaces across the United States and globally.  These creative endeavors infuse digital technologies and science with human rights education for innovative learning.  For the past 30 years, human rights educators have been working to develop creative pedagogies, methodologies, and lessons that integrate cognitive, affective, and behavioral learning within their teaching practices.  However, many human rights educators come from fields of social sciences, literature, and the arts. The current period in our history is finally acknowledging the teaching of the interconnectivity of the natural and human worlds.  Global actors and educators recognize the importance of bringing science and data into classrooms to address climate change and human inequalities, among other topics.  At the same time, many human rights educators are trying to figure out how to bring science and digital technologies into their teaching practices to uphold human rights and engage their students in “real-world” problem-solving and innovation. We assume this is a trend that will only increase after schooling returns to what we consider “normal.”

Rectifying the Lack of Protection for Environmental Refugees in International Law: The Escalating Reality of the Climate Crisis

Abigail Kleiman received an honorable mention from the AAAS Science and Human Rights Coalition's 2020 Student Essay Competition.

Abigail Kleiman, Barnard College

Rights and Meanings Surrounding Advanced Technologies for Disorders of the Brain

From primary care to specialty care using innovative and emerging medical technologies, access should be a human right. While the right to health is outlined in the Universal Declaration of Human Rights and the right to healthcare is implied in national documents such as the Canada Health Act and the United States Patient Protection and Affordable Care Acts, reality does not ubiquitously match intention. With tiered healthcare systems that underserve rural, remote and racialized populations, the right to health is not realized equally across populations. In this session we will explore issues pertaining not only to access, but to the values, priorities and meanings associated with modern technologies for major disorders involving the brain. We focus on functional neurosurgery that may involve invasive irreversible interventions such as resection of brain tissue for epilepsy, and less invasive modulatory interventions such as deep brain stimulation (DBS) for movement disorders, chronic pain and mental health disorders. These advanced neurotechnologies can remediate unbearable suffering and restore dignity to the lives of people living with intractable conditions; however, concerns have been raised about their suitability for certain populations alongside questions about availability. Adding to these ethical complexities, limited knowledge exists about how various cultural groups may differentially conceptualize and relate to the use of functional neurosurgical interventions. By bringing together perspectives from medical experts, Indigenous knowledges and rural and remote health, we find interlocking concerns and unique considerations that collectively inform a rights-based approach to meaningful access to functional neurosurgery. We argue that the right to brain health is realized not only by facilitating equity in access to care, but that medical interventions must be relevant and meaningful to the intersecting realities of diverse populations.

Louise Harding, BSc
Judy Illes, CM, PhD

The Search for a COVID-19 Vaccine: Is It Time for a Human Rights Approach to Scientific Development?

Malwina Wójcik is the graduate student winner of the AAAS Science and Human Rights Coalition's 2020 Student Essay Competition.

Malwina Wójcik, University of Bologna

Societal and Ethical Impacts of Germline Genome Editing: How Can We Secure Human Rights?

Genome editing has opened up the possibility of heritable alteration of the human germline. The potential of this powerful tool’s impact on the future of human life has spurred an urgent call for establishing robust regulatory frameworks to outline possible permissible uses of genome germline editing and to map a rational and ethical course. In response, several major national scientific bodies and international organizations have convened and released comprehensive reports outlining recommendations for ethical regulatory frameworks.

In this session, we will describe how a Human Rights Impact Assessment should guide ongoing decision making about any intended use of germline genome editing in humans.  This assessment can provide the socially shared, transparent criteria necessary to structure inclusive, productive democratic deliberation focused on the protection of human rights. Specifically, we will show how the HRIA provides a way to examine how empirical conditions including political and socioeconomic forces, combined with new technologies, may have the potential to undermine human rights, and whether the potential benefit of a biomedical intervention or policy is outweighed by an undue burden on human rights.

Jodi Halpern, MD, PhD
Sharon O’Hara, DrPH, MPH, MS
Kevin Doxzen, PhD
Lea Witkowsky, PhD