title: Disclosing incidental findings in genetics contexts: a review of the empirical ethical research.
abstract: The disclosure of incidental findings, also called unsolicited findings, unexpected results, and secondary variants, is increasingly recognised as an issue in clinical and research genetics contexts. The rise of next generation sequencing methods has only intensified the issue, increasing the likelihood of incidental findings appearing. This review focuses on empirical research on the ethical issues involved. Electronic databases were searched for articles covering quantitative and qualitative research on the ethical issues involved in the disclosure of incidental findings in clinical and research genetics contexts. 16 articles were ultimately accepted for review. Data was extracted and synthesised on the factors that should be taken into account during the decision-making process surrounding the disclosure of an incidental finding in a genetics context. These factors include the possibility of disclosure, various practical and technical factors, and various ethical factors. We suggest the development of a decision-making tree, involving an exploration of the practical and ethical concerns raised by the studies. This is in our view the best way of handling the wide variety of both possible incidental findings and parties interested in the disclosure of incidental findings.
authors.affiliation: Centre for Biomedical Ethics and Law, Catholic University of Leuven, Kapucijnenvoer 35, Leuven 3000, Belgium. Electronic address: 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: Kris
authors.initials: K
authors.lastname: Dierickx
mesh_terms: D003661:Decision Support Techniques; D036262:Empirical Research; D005817:Genetic Counseling / Q000941:ethics; D030342:Genetic Diseases, Inborn / Q000175:diagnosis / Q000235:genetics; D020022:Genetic Predisposition to Disease; D006801:Humans; D033162:Incidental Findings; D014342:Truth Disclosure / Q000941:ethics*
keywords: Disclosure; Ethics; Genetics; Incidental findings