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The sequencing of the entire genome is a new form of genetic testing which, instead of targeting certain isolated genes, decodes all of an individual’s genes all at once (= his or her genome). This technology is advancing rapidly and its costs are decreasing, which suggests that it could soon displace conventional testing. This is not without a certain number of problems which are ethical (because geneticists will be faced with information they did not request) and also organisational and financial in nature. How can this technological advancement be integrated into Belgian healthcare? Who will be able to request these analyses? Who will have enough expertise to interpret their results? How and by whom will they be communicated to the patient? How will the management and security of the resultant gigabytes of results be organised? And of course, how will this be financed? In order to be able to explore the responses to these different issues in an unhurried fashion, we recommended that the complete genome sequencing technology be introduced as a first step in the form of a pilot project, which would enable the problems to be tackled one by one with the parties concerned, and various solutions to be tested – and assessed! – before making definitive decisions which will set our country on the path of this decidedly futuristic technology.

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Predictive genetic testing for susceptibility to psychiatric conditions is already available in the private sector and may one day become part of standard practice. It is mostly relevant to minors, because the onset of psychiatric diseases is generally late adolescence or early adulthood, and so, early identification may prevent or delay the development of these debilitating disorders. However, due to the variety of biological and environmental factors that cause mental disorders, psychiatric genetic testing is unlikely to provide the clear and immediate medical benefits that current guidelines require for allowing testing in minors. While several authors have argued that non-medical benefits may play a crucial role in favour of predictive testing for non-psychiatric diseases, little research has discussed such a role in relation to mental disorders. This paper aims at exploring whether the potential for non-medical benefits could ever make testing minors for their genetic predisposition to psychiatric disorders ethically justifiable. A systematic review and interpretative content analysis of the literature on psychiatric genetic testing was conducted to identify the arguments in favour and against testing minors. Results showed that four major non-medical benefits are proposed in the literature: (1) psychological benefits, (2) respect and promotion of individual autonomy and self-determination, (3) empowerment from genetic knowledge, (4) increase in resources for the mentally ill. These non-medical benefits suggest that there may be circumstances where testing minors for their genetic predisposition to psychiatric disorders can be considered ethically appropriate. Further research will need to empirically assess the potential non-medical benefits identified in this study and involve minors in the debate. These future empirical studies will need to be accompanied by a more fundamental normative reflection on the ultimate values that we want to promote by testing minors, in order to evaluate whether these values are worth pursing despite the potential harms that might derive.

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The last decades, genetics became more important in the diagnosis of several cancer syndromes, especially for Hereditary Breast and Ovarian Cancer syndrome and Lynch Syndrome. Being diagnosed with a genetic syndrome does not only affect the patient but also his relatives who could be at risk as well. Disclosing this information is usually not a problem, but some patients do not inform their relatives about their genetic risk. To analyse the reasons for non-disclosure by cancer patients, we performed a systematic search in PubMed and Web of Science for all the possible articles that could contain reasons for non-disclosure. After applying the inclusion criteria there were 40 articles remaining which we analysed by inductive content analysis. Various reasons made patients decide not to inform their at-risk relatives. We divided them in three categories: reasons relating to the individual himself, the relative at risk and reasons relating to the family. The most important reasons for non-disclosure are that patients do not want to cause anxiety or stress in their family and that there is a distant relationship with their relatives. It is important for health care professionals to know what these reasons are, so they can try to convince their patients to disclose and help them informing their at-risk family members.