Ethical Judgment of What (Not) to Be Disclosed

Chapter three provides an in-depth ethical analysis of what types of incidental findings (IFs) from genomic research or clinical testing should or should not be disclosed to individuals. It begins by providing a lucid definition of IFs and delineating the scope under consideration. The chapter then examines two categories where disclosure is judged as obligatory: firstly, informing potential recipients about the likelihood of IFs arising, and secondly, disclosing life-saving IFs associated with actionable genetic conditions. A key focus is the controversial issue of misattributed paternity IFs, which reveal that the assumed father is not the biological father. Two contrasting perspectives are presented: one prohibiting disclosure to the assumed father based on Islamic jurisprudential principles and societal ethical concerns, while another minority viewpoint asserts the obligation to disclose, with supporting arguments outlined, and accompanied with critical commentary. Subsequently, the chapter goes on to analyze IFs recommended (praiseworthy but not obligatory) for disclosure, employing the theoretical framing of the Islamic ethical concepts around seeking/providing medical care, with the American College of Medical Genetics (ACMG) list serving as an applied example. Additionally, a category of IFs judged as reprehensible (blameworthy but not prohibited) to disclose is examined through the lens of distant lineage and demonstrated through the applied case of genetic ancestry findings.