Genetic testing technology has brought the ability to predict the onset of diseases many years before symptoms appear and the use of such predictive testing is now widespread. The medical fraternity has met the application of this practice to children with caution. The justification for their predominantly prohibitive stance has revolved around the lack of a readily identifiable medical benefit in the face of potential psychological harms to the child. We argue that predictive testing can have important psychosocial benefits and (...) that the interests of the child have been construed too narrowly. Proponents of a prohibitive stance also argue that testing in childhood breaches the child's future right to make the same decision as an autonomous adult and to maintain this information as confidential. We argue that predictive genetic testing of children is not necessarily a violation of the child's future autonomy. Indeed, in some cases, such testing may facilitate the development of autonomy in the maturing child. We argue that parents are generally best placed to judge what is in their own child's overall interests, and that a parental request for testing after appropriate genetic counselling should be respected unless there is clear evidence that the child will be harmed in an overall sense as a result of testing. (shrink)

One of the central arguments given to resist testing currently healthy, asymptomatic children for adult-onset diseases is that they may be psychologically harmed by the knowledge gained from such tests. In this discussion I examine two of the most serious arguments: children who are tested may face limited futures, and that testing may result in damage to the child’s self esteem . I claim that these arguments do not stand up to critical evaluation. In conclusion, whilst I do not suggest (...) that all at-risk children should be tested for adult-onset diseases we ought to listen carefully to some parental requests for such testing because the putative psychological harms may not be as significant or likely as initially thought. This is because parents generally have the best interests of their children at heart and if they are properly supported and educated about predictive genetic testing and the possible consequences, then the risk of psychological harms occurring may be ameliorated. (shrink)

This paper first considers why it is important to give children genetic information about hereditary conditions in the family, which will go on to affect their lives in a salient way. If it is important to inform children that they are at risk for an adult-onset disease that exists in the family, why should they not also grow up knowing whether they actually carry the genetic mutation? Central to this discussion is the importance of the process of disclosure and the (...) environment in which genetic information is divulged. It is concluded that the reasons given for defending disclosure of genetic conditions in the family to children are also important reasons to cautiously defend predictive genetic testing of children for adult-onset diseases. (shrink)

Over the last decade, more U.S. taxpayers money has been spent trying to anticipate and address the bioethical issues raised by advances in human genetics than any other set of issues in the field. Does this make sense? Not everyone in bioethics thinks so. Some think there are more important topics, like issues of health care justice, that will be neglected if the field continues to follow the money to dwell on the moral challenges of a relatively small community of (...) research scientists. Others decry genetic exceptionalism as inappropriately singling out this scientific enterprise for criticism and regulation, when the same issues are faced even more acutely in other parts of the biomedical world. Human genetics is not accelerating as fast as pharmacology, for example, or as easy to abuse as virology, or as philosophically challenging as neurology. (shrink)