Unintended social effects of newborn genomic data use and storage in the age of sociogenomics and genetic surveillance

Abstract

Genetic data are increasingly important in the field of medicine for diagnostics as well as preventative health care. With the emergence of rapid and cost-effective DNA-sequencing technology, proposals and pilot studies of genomic newborn screening programs have been put in motion in several countries, with the hope of broad medical benefits for future generations. These plans are raising significant ethical issues, as genetic data and samples contain highly sensitive information.