Deliberations with American Indian and Alaska native communities about genomics

Abstract

With the rapid growth of genetic and genomic research and medical testing in recent years, more attention is being paid to their ethical and societal implications, including citizens’ concerns about potential risks and benefits of these technologies. Indigenous peoples represent a particularly important group where such advances are concerned, due to a long history of exploitation and marginalization by the U.S. federal government and the marked disparities they experience in health services and health outcomes relative to other populations. A consortium of researchers and practitioners in the US, in close partnership with indigenous community partners, has begun to study the concerns and views of American Indian and Alaska Native peoples on genomics through a series of deliberations in three communities in Oklahoma, South Dakota, and Alaska. This presentation will describe the design and implementation of these deliberative forums, as well as the results of the deliberations from a process perspective. In addition, it discusses some of the implications of this work for scholarship and practice in deliberation, both for efforts involving indigenous peoples and for forums focused on genetics and ethical, legal, and societal implications (ELSI).

About the speaker

Erika Blacksher is an associate professor and director of undergraduates studies in the Department of Bioethics and Humanities at the University of Washington in Seattle. Dr. Blacksher studies the ethical and policy implications of the social determinants of health with focus on ethical questions raised by health inequalities, debates over health responsibility, and the role of participatory and deliberative forms of engagement in advancing health equity. She often works in collaborative community-academic partnerships to design and conduct deliberations that convene minority and marginalized groups to identify their health priorities and policy preferences.

Justin Reedy is an associate professor in the Department of Communication and research associate in the Center for Risk & Crisis Management at the University of Oklahoma. He studies political communication and deliberation, group and organizational communication, and the perception of risk. In particular, his research focuses on how groups of people make political and civic decisions in face-to-face and online settings, as well as how people and policy makers can come together to deliberate and make better decisions on public policy issues that involve significant societal and personal risk.