fully answers the questions. This extensive informed consent process—a necessary component of autonomy, which is a cornerstone of medical ethics—is quite incomplete in the mass marketing process of DTC-GT. Patients who order these tests without consultation or advice from a physician may misinterpret the results, or at least may not understand their meaning within the broader context of their own health environment, and thus may make ill-advised decisions.
All clinicians must be familiar with the details of DTC-GT, because patients, as well as friends and family members, may make inquiries of us regarding our opinions on this enterprise. The testing company 23andMe presents information on the issues of privacy and data protection for the purchaser that is important for physicians to review, including content on meaningful choice, privacy by design, third-party sharing, data security, and research. Some individuals may not understand the implications of the data handling and should be given some explanations, preferably by their physician, of what could “go wrong.” While there are conspiracy theories on how this data may be obtained and utilized by insurance companies and/or employers, the more likely scenario is that “data hacking” could result in the exposure of an individual’s personal genetic information, and no one knows just where that might lead.
Interpretation and Analysis
Physicians should consider some significant medical ethical issues for their patients, including informed consent, decision-making by the individual based on test results without knowledgeable physician interpretation, appropriate risk/benefit analysis of data acquisition, limitations of testing (including false positives and false negatives), and failure to interpret data appropriately in the context of the individual’s past and current health/wellness status. Individuals may place an order for genetic-based health testing without fully understanding the serious personal and family implications of the information they might receive.