Community-led risk analysis of direct-to-consumer whole-genome sequencing

Abstract

Direct-to-consumer (DTC) genetic testing is cheaper and more accessible than ever before. What is generally hidden from the consumer is the intention to combine, reuse, and resell this genetic information as powerful datasets. This financial gain is creating a competitive DTC market, reducing the price of whole genome sequencing (WGS) down to USD 299. Entering this transition from SNP based DTC testing to WGS DTC testing, individuals looking for access to their whole-genomic information face new privacy and security risks. We studied the ownership question of whole genomic data for 30 weeks, by conducting weekly community discussions and seminar series. Differences between WGS and other methods of consumer genetic tests are left unexplored by regulation, leading to the application of legal data anonymization methods on whole genome data, and questionable consent methods. Large representative genomic datasets are important for research and improve the standard of medicine and personalized care. However, this data can also be used by market players, law enforcement, and governments for surveillance, population analyses, marketing purposes, and discrimination. Here, we present a summary of the state of WGS DTC genetic testing and its current regulation, through community-based methods to expose dual-use risks in consumer facing biotechnologies.