DTC genetic testing companies fail transparency prescriptions

Abstract

In 2007, the American Society of Human Genetics issued recommendations for what the new and largely self-regulating industry offering genetic tests directly to consumers should disclose to potential customers. Websites for every DTC company offering health-related genetic tests as identified by a public policy group were evaluated for compliance with those transparency recommendations. The results showed that only six of the 25 companies studied met even 70% of the standards and that overall, the industry complied with the disclosure standards just 44% of the time. Further, the study revealed that even when companies met the letter of the law, they often failed to disclose to consumers the shortcomings associated with the tests and thus promoted genetic determinism. By failing to meet the spirit of the ASHG transparency recommendations, the DTC genetic testing industry demonstrates disdain toward the ethical principle of informed consent.