A PERFECT STORM: THE ETHICAL CHALLENGES OF SIMULTANEOUS INCREASES IN THE NEED FOR LONG-TERM CARE, USE OF DIRECT-TO-CONSUMER GENETIC TESTING, AND RISK OF GENETIC DISCRIMINATION IN THE U.S.

Abstract

The phrase ‘a perfect storm’ is an expression first derived from the novel The Perfect Storm by Sebastian Junger, meaning three concurrent circumstances colliding to create a poor outcome. The United States is approaching a current day Perfect Storm between the healthcare, healthcare technology, and legislative spaces. This paper begins with a case study to ground the discussion before diving into the Perfect Storm’s three elements; an increased demand for long-term care due to the rapidly aging population and increased life expectancy, an increased use of direct-to-consumer (DTC) genetic testing used for determining genetic risk of disease, and an increased risk of genetic discrimination and lack of adequate legislative protections. Ethical and moral principles will be connected to the Perfect Storm showing how many identified ethical aspects are, or will be, in violation of principles as these three factors continue to converge. This paper is not meant to outline a solution to the Perfect Storm, but suggestions for ways to think about alleviating burdens from these elements will be discussed. The United States is reaching a critical breaking point where these three factors are set to have serious consequences if appropriate actions are not taken