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

Abstract

Definition of the problem: 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. Arguments: This article will shed light on some problems associated with the kind of systematic genetic population data collection generated by newborn sequencing projects. Especially regarding mid- and long-term storage, effects not only for an individual and their immediate family can be expected, but organized collections of private information on this scale will also have implications on a broader level of society. Academic scientists, commercial technology developers and security authorities are currently generating a variety of controversial genetic knowledge and applications of genetic data. Conclusion: While these concerns could potentially be outweighed by a medical benefit, they should be taken into consideration when future projects are designed, especially in light of changing political landscapes. To consider possible negative effects, stakeholder engagement should be extended from patient advocacy groups to other social minorities impacted by genetic data and research.