The role of disease characteristics in the ethical debate on personal genome testing

In this paper, we identify and discuss four disease characteristics - severity, actionability, age of onset, and the somatic/psychiatric nature of disease - and show how these lead to specific ethical issues. By way of illustration, we apply this framework to genetic susceptibility testing for three diseases: type 2 diabetes, age-related macular degeneration and clinical depression. For these three diseases, we point out the ethical issues that are relevant to the question whether it is morally justifiable to offer genetic susceptibility testing to adults or to children or minors, and on what conditions.We conclude that the ethical evaluation of personal genome tests is challenging, for the ethical issues differ with the diseases tested for. An understanding of the ethical significance of disease characteristics will improve the ethical, legal and societal debate on personal genome testing.A growing number of personal genome testing services are presently available that estimate genetic susceptibility to multifactorial diseases [1]. Unlike genetic tests for monogenic diseases, susceptibility tests for multifactorial diseases can be obtained almost exclusively on the direct-to-consumer market. Personal genome tests are non-targeted: they determine a person's risk for a multitude of multifactorial diseases simultaneously [2-5], including cardiovascular disease, Alzheimer's disease, osteoporosis, type 2 diabetes, schizophrenia, and many types of cancer. One of the leading personal genome testing companies is currently estimating personal risks for over two hundred diseases and other phenotypic traits in one single test [2]. The large quantity of test results will have limited clinical significance for and varying emotional impact on consumers, which are in part connected with differences between the diseases tested for.Differences between diseases may have important implications for the ethical, legal and societal debate on genetic susceptibility testing for multifacto