The Concept of Personal Utility in Genomic Testing: Three Ethical Tensions

Health Technology Assessment (HTA) has traditionally focused on efficacy, safety, and cost-effectiveness. There has long been concern, however, that this is determined by the goals of healthcare providers/payers, not patients. As a result, HTA arguably fails to reflect the overall value of health technologies-including their "non-clinical" or "personal" utility to patients and their families. The use of genomic testing in clinical care is one domain where this problem is evident, as the personal utility of results is often especially significant. As such, there are growing calls for HTA frameworks to adopt personal utility as a distinct element of value when assessing clinical genomic tests. We agree that personal utility is important to HTA in clinical genomics. However, against a trend toward comprehensive conceptions of personal utility within HTA, we advocate for a restrictive approach to assessing the value of personal utility in the case of clinical genomic testing.