Samenvatting

This article aims to contribute to the public debate on the consequences and risks of the spreading of DNA data related to direct-to-consumer (DTC) genetic testing. Market developments drive DTC companies to find new business models. As a result of mergers and acquisitions and of the developments of new products and services, DNA data are often used differently than what they were originally collected for. Since DTC DNA data are not protected as well as health-related data generally are, it is hard to keep track of these data. This is partly due to legal and ethical issues such as unclarity of who owns DNA and problems with informed consent. Risks are identified with regards to privacy, information security, the right not to know, (un)equal opportunities, and national security. The author calls for an investment in knowledge and awareness in order to allow for a fair balance between opportunity and risk of DTC DNA products and services.