Personal genomics: information can be harmful

Information is generally considered a good thing. Information may of course lead to benefit through some action based on information. But, action can also lead to harm. We know about harm not only from everyday experience and common sense but also from the field of clinical medicine. Approaches to weigh harm vs. benefit have been developed in clinical medicine to aid doctors, patients and policy-makers in deciding whether to obtain and how to use certain kinds of information. When personal genomics is used to improve health and prevent disease, the fundamental issues relating to benefit and harm of information are exactly the same as in the clinical medicine field of prevention. If information about risk or prognosis can be harmful in clinical medicine, is there a difference just because the health information is ‘genomic?’ In this issue of the Journal, Gulcher and Stefansson argue that genetic risk information obtained from ongoing discoveries of genetic factors for common complex diseases can be useful for prevention and early detection now [1]. They make the case that risk assessment tests based on these discoveries represent tools for more cost-effective prioritization of scarce resources to address common and costly and deadly common diseases. They make the case that potential benefits of early detection are intuitive, biologically plausible and generally good for healthcare utilization and individual decision making; we contend that potential harms of such tests need to be explicitly considered and evaluated in appropriately designed studies before such tests are used on a population-wide basis in otherwise healthy people. In this commentary, we suggest that personal genomic information used for health promotion or prevention can cause both benefits and harms; we describe briefly how the field of clinical medicine has developed principles and processes to assess benefits vs. harms; and we show that genomic information used in health promotion and prevention is no different from other kinds of ‘clinical’ information and should be subjected to the same kinds of evidentiary considerations. Our fundamental argument is that the presumption of health benefits from personal genomics needs to be rigorously explored using research to assess the relative benefits and harms of genetic information before such tests become widely available in the population. Information can cause harm