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Genomic sequencing technologies are becoming increasingly embedded in clinical practice and yet there is still considerable debate over how to handle results that have relevance for the proband’s family members. In this study, we conducted a systematic search for diagnostic consent forms in order to analyze how forms addressed the issues of the family relevance and communication of results. From the 67 consent forms from 11 different countries examined in this study, we observed significant differences in the degree to which these issues were addressed. The forms indicated that genetic services have varying practices regarding the analysis of family members’ samples and how results with familial implications are reported. While many of the forms did not explicitly discuss the communication of results with family members, the forms that did took differing approaches to the issue and in some cases even offered probands options regarding whether or not results would be communicated. This was observed even in countries where national guidelines and legislation allow for the disclosure of results even in the absence of proband consent. Seeing as consent forms are an important way to communicate information with probands and guide discussions with health care professionals, we recommend that consent forms provide more clarity on the issues surrounding the family relevance of genomic information and communication of results.

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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.