title: Ethical signposts for clinical geneticists in secondary variant and incidental finding disclosure discussions.
abstract: While ethical and empirical interest in so-called secondary variants and incidental findings in clinical genetics contexts is growing, critical reflection on the ethical foundations of the various recommendations proposed is thus far largely lacking. We examine and critique the ethical justifications of the three most prominent disclosure positions: briefly, the clinical geneticist decides, a joint decision, and the patient decides. Subsequently, instead of immediately developing a new disclosure option, we explore relevant foundational ethical values and norms, drawing on the normative and empirical ethical literature. Four ethical signposts are thereby developed to help guide disclosure discussions. These are: respectful sharing of the clinician's expertise; transparent communication; epistemic modesty; and respect for the embedded nature of the patient. We conclude by considering the most common current disclosure positions in the light of the four ethical signposts.
authors.affiliation: Centre for Biomedical Ethics and Law, KU Leuven, Kapucijnenvoer 35, 3000, Leuven, Belgium, gabrielle.christenhusz@med.kuleuven.be.
authors.forename: Gabrielle M
authors.initials: GM
authors.lastname: Christenhusz
authors.forename: Koenraad
authors.initials: K
authors.lastname: Devriendt
authors.forename: Hilde
authors.initials: H
authors.lastname: Van Esch
authors.forename: Kris
authors.initials: K
authors.lastname: Dierickx
mesh_terms: D003142:Communication; D030881:Disclosure / Q000941:ethics*; D020022:Genetic Predisposition to Disease / Q000235:genetics* / Q000523:psychology; D005820:Genetic Testing / Q000941:ethics* / Q000592:standards; D005826:Genetics, Medical / Q000941:ethics* / Q000592:standards; D006801:Humans; D033162:Incidental Findings; D010817:Physician-Patient Relations