4 - The Ethics of Conducting Genomic Research in Low-Resource Settings

Summary

Chapter 4 explores the implications of Chapters 1, 2, and 3 for genomic research specifically. Increasingly, it is not only the biological samples of human pathogens that are vital for development of medicines, diagnostics, and vaccines, but genetic sequencing data (GSD). While obtaining GSD used to be slow and costly, it is now fast and declining rapidly in price. The effect of these trends are to make more genetic information available, about more people, in more parts of the world. While this problem was long anticipated and prepared for in richer countries – e.g. the Genetic Information Nondiscrimination Act in the U.S. – there is little or no infrastructure for managing genetic findings in many low- and middle-income countries. Ben Berkman, faculty at the National Institutes’ of Health Office of Bioethics, and Haley Sullivan, at the Duke Margolis Center for Health Policy, survey the risks to research participants and the ethical and practical obligations of researchers to protect genetic information in low- and middle-income countries.