New Special Report of the Hastings Center Report

We are pleased to announce the publication of a new Hastings Center Report, special report, "Envisioning a More Just Genomics". The report, a collaboration between The Hastings Center and CERA, outlines opportunities to enhance justice in genomics, toward a world in which genomic medicine promotes health equity, protects privacy, and respects the rights and values of individuals and communities.

Examples of justice-related challenges explored in the special report include increasing the diversity of the genomics workforce, addressing deficiencies in the genomics evidence base caused by sampling bias, ensuring access to genomics research, and maximizing the ability for genomics to advance health equity at both the bench and the bedside.

Editors of the special report are Josephine Johnston, a senior research scholar at The Hastings Center and an associate professor of the University of Otago; Deanne Dunbar Dolan, a research scholar at the Stanford Center for Biomedical Ethics at Stanford Medicine and a coinvestigator at the Center for ELSI Resources and Analysis; Danielle M. Pacia, a research associate at The Hastings Center; Sandra Soo-Jin Lee, professor of medical humanities and ethics and the chief of the Division of Ethics at Columbia University; and Mildred K. Cho, professor of pediatrics and medicine at Stanford University and associate director of the Stanford Center for Biomedical Ethics.

Introduction

• Dolan, D. D., Pacia, D. M., Johnston, J., Lee, S. S.-J., & Cho, M. K. Expanding the agenda for a more just genomics.

Racism and Inequity

• Panofsky, A., Dasgupta, K., Iturriaga, N., & Koch, B. J. Confronting the “weaponization” of genetics by racists online and elsewhere.
• Mackley, M. P., Faghfoury, H., & Chad, L. Rectifying or reinforcing? The (in)equity implications of recontacting practices in genomic medicine.
• Rajagopalan, R. M., D’Antonio, M., & Fujimura, J. H. Enhancing equity in genomics: Incorporating measures of structural racism, discrimination, and social determinants of health.

Fair Inclusion in Research

• Mintz, K. T., Stramondo, J. A., & Tabor, H. K. Nothing about us without us in precision medicine: A call to reframe disability difference in genetics and genomics.
• Wojcik, M. H., Smith, H. S., & Fraiman, Y. S. Where the genetic code meets the zip code: Advancing equity in rare disease genomics.
• Natri, H. M., & Chapman, C. R. Toward justice and community empowerment in genomics studies on sensitive traits.

Data

• Dupras, C., Dubé, M.-P., Gravel, S. & Haidar, H. Accountability for reasonableness as a framework for the promotion of fair and equitable research.
• Kraft, S. A. & Mittendorf, K. F. Can open science advance health justice? Genomic research dissemination in the evolving data-sharing landscape.
• Munung, N. S., Royal, C. D., de Kock, C., Awandare, G., Nembaware, V., Nguefack, S., Treadwell, M., & Wonkam, A. Genomics and health data governance in Africa: Democratize the use of big data and popularize public engagement.

Expanding the Agenda

• James, J. E., Riddle, L., Koenig, B. A., & Joseph, G. Moving toward equity through embedded ELSI ethnography.
• Nie, J.-B. From eugenics to human genome editing: Bionationalism and instrumentalizing life in China within a global context.
• Miner, S. A., & Thurman, T. J. Genomics and biodiversity: Applications and ethical considerations for climate-just conservation.
• Garba, I., & Carroll, S. R. The UN Declaration on the Rights of Indigenous Peoples and Genomics: Ethical complementarity for just research.
• Halley, M. C., Olson, N. W., Ashley, E. A., Goldenberg, A. J., & Tabor, H. K. A just genomics needs an ELSI of translation.