In this article, the phenomenon of unsolicited findings will be explored in the context of European and Dutch legal standards. It focuses on the responsibilities of care providers, and the rights of patients’ when unsolicited findings are discovered during regular diagnostics. On the basis of the latter, I will suggest some guidelines for the handling of unsolicited findings in clinical care; in doing so, some attention will be paid to the research context.
See for instance J.S. Berg and J.K. Muin, “Deploying whole genome sequencing in clinical practice and public health: Meeting the challenge one bin at a time”, Genetics in Medicine13 (6) (2011) 499-504; M.L. Volk and P.A. Ubel, “Better off not knowing: improving clinical care by limiting physician access to unsolicited diagnostic information”, Arch Intern Med 171 (6) (2011) 487-488; G.M. Christenhusz, K. Devriendt and K. Dierickx, “To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts”, European Journal of Human Genetics 20 (2012) 1-8; T. Rigter, L. Henneman, U. Kristoffersson et al., “Reflecting on earlier experiences with unsolicited findings: Points to consider for next generation sequencing and informed consent in diagnostics”, Human Mutation (2013), 1322-1328.
See Health Council of the Netherlands, Secondary findings in the clinical context [Nevenbevindingen bij diagnostiek in de patiëntenzorg] (The Hague: Health Council of the Netherlands, 2014) (in press).