Subject(s)
Biomedical Research/ethics , Biomedical Research/legislation & jurisprudence , Genomics , Internationality/legislation & jurisprudence , Patient Selection , Research Report , Biological Specimen Banks , Confidentiality/legislation & jurisprudence , Direct-To-Consumer Screening and Testing/legislation & jurisprudence , Ethics Committees, Research/legislation & jurisprudence , Genetic Testing/legislation & jurisprudence , Hazardous Substances , Humans , Internet , Policy Making , Research Personnel/psychology , Surveys and QuestionnairesABSTRACT
I provide an overview of the current state of the direct-to-consumer (DTC) genetic testing industry and the challenges that different types of testing pose for regulation. I consider the variety of services currently available. These range from health and ancestry tests to those for child talent, paternity, and infidelity. In light of the increasingly blurred lines among different categories of testing, I call for a broader discussion of DTC governance. I stress the importance of shifting our attention from the activities of the most prominent companies to viewing DTC genetics as an industry with a wide spectrum of services and raising a wide variety of issues. These issues go beyond questions of clinical utility and validity to those of data security, personal identity, race, and the nature of the family. Robust DTC testing has the power to provide meaningful clinical, genealogical and even forensic information to those who want it; in unscrupulous hands, however, it also has the power to deceive and exploit. I consider approaches to help ensure the former and minimize the latter.
