Genomic Privacy and Direct-to-Consumer Genetics: Big Consumer Genetic Data -- What's in that Contract?

Abstract

This is a brief position paper providing a summary of current research on the legal regulation of Direct-to-Consumer Genetic Testing (DTCGT), focussing on the contracts used by DTCGT companies. The overall aim of the larger project has been to explore the existing legal mechanims for the protection of the rights of consumers in their sequenced genetic data in the context of DTCGT. There are several areas of law which could be drawn upon to regulate the industry or which may have relevance for the protection of consumers (data protection, medical device regulation, consumer protection, product liability, and human rights). However, the current mechanism governing the transaction between the consumer and company when an individual purchases a genetic test from a DTCGT company is that website's contract, normally to be found on websites as Terms of Use, Terms of Service, Terms and Conditions, Privacy Policy or Privacy Statement.