Gail Henderson was Principal Investigator of the Center for Genomics and Society at University of North Carolina-Chapel Hill. This center conducted an integrated set of research, policy, and education activities focused on new or heightened ELSI issues resulting from large-scale gene discovery and disclosure projects, and developed policy-relevant recommendations to address translation to practice. The center operated from 2007 - 2019.
This core course offered by the Institute for Public Health Genetics provides an introduction to the ethical, legal, social, and policy issues arising as genetic or genomic knowledge and technologies are developed and made available to individuals and populations. Students will learn to identify and anticipate potential ethical, legal, social, financial, and policy considerations that arise with emerging technologies when applied in clinical, research, consumer, and public health contexts.
The last few years have seen calls for more diverse and representative collections of biological samples for population based translational research. This need has sparked increased interest in using residual bloodspots from state newborn screening programs for research purposes, given that these collections contain DNA from all newborns born in a state each year. Nevertheless, because these specimens were collected as part of a mandatory public health program, their use raises a number of ethical, legal, and social challenges involving consent, privacy, and the identifiability of samples.