Genetic counseling and the ethical issues around direct to consumer genetic testing

Abstract

Over the last several years, direct to consumer (DTC) genetic testing has received increasing attention in the public, healthcare and academic realms. DTC genetic testing companies face considerable criticism and scepticism, particularly from the medical and genetic counseling community. This raises the question of what specific aspects of DTC genetic testing provoke concerns, and conversely, promises, for genetic counselors. This paper addresses this question by exploring DTC genetic testing through an ethical lens. By considering the fundamental ethical approaches influencing genetic counseling (the ethic of care and principle-based ethics) we highlight the specific ethical concerns raised by DTC genetic testing companies. Ultimately, when considering the ethics of DTC testing in a genetic counseling context, we should think of it as a balancing act. We need careful and detailed consideration of the risks and troubling aspects of such testing, as well as the potentially beneficial direct and indirect impacts of the increased availability of DTC genetic testing. As a result it is essential that genetic counselors stay informed and involved in the ongoing debate about DTC genetic testing and DTC companies. Doing so will ensure that the ethical theories and principles fundamental to the profession of genetic counseling are promoted not just in traditional counseling sessions, but also on a broader level. Ultimately this will help ensure that the public enjoys the benefits of an increasingly geneticbased healthcare system. © National Society of Genetic Counselors, Inc. 2012.