Ethical, Legal and Social Issues in the Genetic Testing of Minors

Abstract

(from the chapter) Since the availability of testing for hereditary diseases, genetic testing of minors has stirred controversy as regards the ethical implications of the tests. The fear that genetic testing of children could have adverse social, emotional, psychosocial and educational consequences in childhood or later life has motivated a cautious approach. In the following, we will first discuss the ethical standards that help to decide whether and under which circumstances genetic testing of children can be justified or not. Second, we show how these standards apply to different types of testing, starting with ethical problems in three controversial types of testing, beginning with the least controversial to the most controversial: newborn screening, carrier testing and screening, as well as testing for adult-onset diseases. Screening (of newborns or of carriers) will be discussed as a separate issue because testing is not limited to individual families at risk but extended to the entire population, therefore adding ethical considerations about public health benefits. Carrier testing and predictive testing of minors for adult-onset diseases are chosen because both raise particularly difficult ethical, legal and social questions that warrant a thorough discussion about ethical standards. In addition we will consider persisting ethical and social problems of two types of testing that are at least partly permitted according to existing recommendations. The first example is presymptomatic testing of children with diseases for which prevention and treatment in childhood is available. This type of testing is the least controversial. Significantly fewer guidelines condone the second example which is the testing for diseases with childhood onset where no treatment or prevention exists (Borry, Stultiens, Nys, Cassiman, & Dierickx, 2006). For each type of testing, we will briefly describe the range of existing arguments expressed by different stakeholders and comment on the way disagreement should be dealt with in an ethically acceptable way in this context. Finally, we will discuss further research and developments, in particular what is needed to advance ethically valid decision making in the future. (PsycINFO Database Record (c) 2013 APA, all rights reserved)