Nathaniel Jaffe
Genetic technology is getting cheaper, and millions of individuals are using direct-to-consumer genetic testing (DTC-GT) services. At the same time, the scientific understanding of genetics is improving, making sequencing information more valuable for predictive medicine, research, forensics, and many other fields. In turn, genetic information has become more valuable for third parties like insurers, researchers, and pharmaceutical companies. DTC-GT providers are in a position to provide increasingly low-cost services to a growing consumer base, while stockpiling data of increasing commercial value. The sale of genetic data threatens the privacy of the individuals who provided it and opens them up to discrimination in areas of commerce, insurance, and law enforcement, among others. Congress should enact legislation to prohibit the sale of genetic data from DTC-GT providers to third parties, and permit only the sale of aggregate genetic data, which cannot be easily linked back to individuals. This will protect consumer genetic privacy and neither significantly harm the financial incentives of DTC-GT providers nor hinder genetic research.