Incidental Findings 

Incidental findings denote findings that do not stand in a direct relation to the medical diagnosis or a research project in which they were generated, but that can have impacts on the health of the examined person or relatives. In the general discussion, they are also referred to as unsolicited findings. Such incidental and health-related findings are likely to occur as a result of whole-genome sequencing since this procedure examines all coding sections of the DNA for deviations. If such results are obtained by the applied means of examination, § 9 (1) of the German Genetic Diagnostics Act stipulates that persons concerned are being informed about the occurrence of incidental findings. Successively, the subjects can decide for themselves whether they want to know the precise results or not. Since the Genetic Diagnostics Act only applies to examinations in the context of medical treatment, there are no further obligations with regard to notification of examination. 
There is an international discussion about which incidental findings concerning unexpected genetic traits should or should not be communicated. The German Society of Human Genetics (ger.: Deutsche Gesellschaft für Humangenetik, GfH) recommends informing about results which are analytically verified, scientifically validated and health related. It further sees medicals as obligated to inform patients about incidental findings that indicate a relevant risk for a disease that is treatable. The European Society for Human Genetics (ESHG) sees it as an obligation to report incidental findings if they indicate serious health problems of the tested person or their relatives. In addition, the American College of Medical Genetics and Genomics (ACMG) created a “minimum” list of 57 known genetic variants. It lists incidental findings of whole genome analysis that should in any case be mentioned in the laboratory report. According to the requirements of the ACMG and the ASHG, patients should also be informed about incidental health-related findings, if they decided against the communication of such findings in the medical interview before the examination.

Statement by the German Society of Human Genetics on incidental genetic findings in diagnostics and research. Online-Version (German)

European Society of Human Genetics (2013): Whole-genome sequencing in health care. Recommendations. In: European Journal of Human Genetics 21 (6), 580–584. doi: 10.1038/ejhg.2013.46 Online Version

American College of Medical Genetics and Genomics (2013): Recommendations for reporting of incidental findings in clinical exome and genome sequencing. In: Genetics in Medicine 15 (7), 565–574. doi: 10.1038/gim.2013.73 Online Version

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