User Attitudes On Direct-to-Consumer Genetic Testing

摘要

Advances in biotechnology now allow users to obtain their genetic information, including ancestry and predisposition to various diseases and health issues, with relative ease. With these new commercial services come a host of privacy concerns with respect to data sharing and access. User data is being sold to third parties, including pharmaceutical and biotechnology companies, and may be accessed by law enforcement in accordance with proper legal procedures. Moreover, many users of these services go on to deposit the data they obtain into online, public repositories that are fully accessible to anyone with an internet connection. The full extent of the risks they face may not be apparent to users. This paper reports on a semistructured interview study ($n=24$) examining user concerns regarding these tests, what information they believe they are revealing, and what they think companies are doing with their data. We find that users are concerned with privacy, and understand at a basic level the nature of the data they are revealing. However, their privacy concerns are often insufficient to deter them from taking such a test, and many have difficulty grasping some of the implications of sharing their genetic information with commercial entities.