title: Moral Duties of Genomics Researchers: Why Personalized Medicine Requires a Collective Approach.
abstract: Advances in genome sequencing together with the introduction of personalized medicine offer promising new avenues for research and precision treatment, particularly in the field of oncology. At the same time, the convergence of genomics, bioinformatics, and the collection of human tissues and patient data creates novel moral duties for researchers. After all, unprecedented amounts of potentially sensitive information are being generated. Over time, traditional research ethics principles aimed at protecting individual participants have become supplemented with social obligations related to the interests of society and the research enterprise at large, illustrating that genomic medicine is also a social endeavor. In this review we provide a comprehensive assembly of moral duties that have been attributed to genomics researchers and offer suggestions for responsible advancement of personalized genomic cancer care.
authors.affiliation: Department of Pathology, University Medical Center Utrecht, Utrecht, The Netherlands. Electronic address: S.Vos-4@umcutrecht.nl.
authors.forename: Shoko
authors.initials: S
authors.lastname: Vos
authors.affiliation: Department of Medical Humanities, University Medical Center Utrecht, Utrecht, The Netherlands.
authors.forename: Johannes J M
authors.initials: JJM
authors.lastname: van Delden
authors.affiliation: Department of Pathology, University Medical Center Utrecht, Utrecht, The Netherlands.
authors.forename: Paul J
authors.initials: PJ
authors.lastname: van Diest
authors.affiliation: Department of Medical Humanities, University Medical Center Utrecht, Utrecht, The Netherlands.
authors.forename: Annelien L
authors.initials: AL
authors.lastname: Bredenoord
mesh_terms: D019295:Computational Biology; D015894:Genome, Human; D023281:Genomics / Q000941:ethics*; D006801:Humans; D008495:Medical Oncology / Q000941:ethics; D028681:Moral Obligations; D057285:Precision Medicine / Q000941:ethics*; D012108:Research Personnel / Q000941:ethics*
keywords: cancer; ethics; genomics; moral duties; next-generation sequencing; personalized medicine.