title: The elusive ideal of inclusiveness: lessons from a worldwide survey of neurologists on the ethical issues raised by whole-genome sequencing.
abstract: The anticipation of ethical issues that may arise with the clinical use of genomic technologies is crucial to envision their future implementation in a manner sensitive to local contexts. Yet, populations in low- and middle-income countries are underrepresented in studies that aim to explore stakeholders' perspectives on the use of such technologies. Within the framework of a research project entitled "Personalized medicine in the treatment of epilepsy", we sought to increase inclusiveness by widening the reach of our survey, inviting neurologists from around the world to share their views and practices regarding the use of whole-genome sequencing in clinical neurology and its associated ethics. We discuss herein the compelling scientific and ethical reasons that led us to attempt to recruit neurologists worldwide, despite the lack, in many low- or middle-income countries, of access to genomic technologies. Recruitment procedures and their results are presented and discussed, as well as the barriers we faced. We conclude that inclusive recruitment remains a challenging, albeit necessary and legitimate, endeavour.
authors.affiliation: Institut de recherche en santé publique (IRSPUM), Omics-Ethics Research Group, University of Montreal, PO Box 6128, Station Centre-ville, Montreal, QC, H3C 3 J7, Canada.
authors.forename: Thierry
authors.initials: T
authors.lastname: Hurlimann
authors.affiliation: Institut de recherche en santé publique (IRSPUM), Omics-Ethics Research Group, University of Montreal, PO Box 6128, Station Centre-ville, Montreal, QC, H3C 3 J7, Canada.
authors.forename: Iris
authors.initials: I
authors.lastname: Jaitovich Groisman
authors.affiliation: Institut de recherche en santé publique (IRSPUM), Omics-Ethics Research Group, University of Montreal, PO Box 6128, Station Centre-ville, Montreal, QC, H3C 3 J7, Canada. beatrice.godard@umontreal.ca.
authors.forename: Béatrice
authors.identifier: 0000-0003-1980-7755
authors.initials: B
authors.lastname: Godard
mesh_terms: D001291:Attitude of Health Personnel; D026688:Bioethical Issues; D020811:Biomedical Technology; D003695:Delivery of Health Care; D003906:Developing Countries; D004827:Epilepsy / Q000235:genetics; D032984:Ethics, Research; D036281:Genetic Research / Q000941:ethics*; D023281:Genomics; D006801:Humans; D000072141:Neurologists; D057285:Precision Medicine / Q000941:ethics; D017422:Sequence Analysis, DNA; D012935:Social Justice; D011795:Surveys and Questionnaires
keywords: Fair inclusion; Genomics; Justice; Research ethics