title: Am I My Family's Keeper? Disclosure Dilemmas in Next-Generation Sequencing.
abstract: Ever since genetic testing is possible for specific mutations, ethical debate has sparked on the question of whether professionals have a duty to warn not only patients but also their relatives that might be at risk for hereditary diseases. As next-generation sequencing (NGS) swiftly finds its way into clinical practice, the question who is responsible for conveying unsolicited findings to family members becomes increasingly urgent. Traditionally, there is a strong emphasis on the duties of the professional in this debate. But what is the role of the patient and her family? In this article, we discuss the question of whose duty it is to convey relevant genetic risk information concerning hereditary diseases that can be cured or prevented to the relatives of patients undergoing NGS. We argue in favor of a shared responsibility for professionals and patients and present a strategy that reconciles these roles: a moral accountability nudge. Incorporated into informed consent and counseling services such as letters and online tools, this nudge aims to create awareness on specific patient responsibilities. Commitment of all parties is needed to ensure adequate dissemination of results in the NGS era.
authors.affiliation: Department of Medical Humanities, Julius Center, University Medical Center Utrecht, Utrecht, The Netherlands.
authors.forename: Roel H P
authors.initials: RH
authors.lastname: Wouters
authors.affiliation: Department of Medical Oncology, Cancer Center, University Medical Center Utrecht, Utrecht, The Netherlands.
authors.forename: Rhodé M
authors.initials: RM
authors.lastname: Bijlsma
authors.affiliation: Department of Genetics, University Medical Center Utrecht, Utrecht, The Netherlands.
authors.forename: Margreet G E M
authors.initials: MG
authors.lastname: Ausems
authors.affiliation: Department of Medical Humanities, Julius Center, University Medical Center Utrecht, Utrecht, The Netherlands.
authors.forename: Johannes J M
authors.initials: JJ
authors.lastname: van Delden
authors.affiliation: Department of Medical Oncology, Netherlands Cancer Institute, Amsterdam, The Netherlands.
authors.forename: Emile E
authors.initials: EE
authors.lastname: Voest
authors.affiliation: Department of Medical Humanities, Julius Center, University Medical Center Utrecht, Utrecht, The Netherlands.
authors.forename: Annelien L
authors.initials: AL
authors.lastname: Bredenoord
mesh_terms: D030881:Disclosure / Q000941:ethics*; D005190:Family; D059014:High-Throughput Nucleotide Sequencing / Q000941:ethics*; D006801:Humans; D033162:Incidental Findings; D028681:Moral Obligations; D024382:Professional Role
keywords: NGS; ethics; libertarian paternalism; moral accountability nudge; next-generation sequencing; unsolicited finding