Direct-to-consumer genetic testing: Ethical issues and public health challenges across borders

Direct-to-consumer genetic tests raise ethical and policy questions around the world. Despite cautionary statements issued by professional organizations internationally, e.g. the CDC, American College of Medical Genetics, and Human Genome Commission, they remain unregulated. Anyone with access to the internet and the financial means can order a test. While examining a variety of genetic mutations and polymorphisms with a range of penetrance and associated risk, the paucity of information on sensitivity, specificity and predictive value makes certain DTC genetic test results difficult to interpret and their clinical significance and utility unclear. Predictive genetic tests do not necessarily indicate the time of onset or severity of a disease or condition. The prevalence of people accessing such tests and public health impact across national and international borders remains unclear, especially in light of medical tourism and challenges of cross border information and regulation.

Critical examination of ethical issues raised by DTC genetic testing will include: (1) the balance of harms and benefits; (2) rights and responsibilities, particularly whether there is a ‘right to know' or ‘right not to know' about our genetic make-up; (3) confidentiality concerns; (4) justice issues including access and resource allocation in the developed and developing world. Ethical issues surrounding DTC genetic testing are not confined within borders. Public health professionals need to collaborate in creative ways to gather data on, increase education about, and investigate whether there are appropriate policies and parameters to set on DTC genetic testing nationally and internationally.