Ethical Considerations in Screening for Rapid Eye Movement Sleep Behavior Disorder in the General Population

ABSTRACT Clinical studies have shown that up to 90% of patients with idiopathic rapid eye movement sleep behavior disorder (RBD) will eventually be diagnosed with a clinical α‐synucleinopathy. Because of this high conversion rate, screening for RBD is often performed to identify eligible participant...

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Published in:Movement disorders Vol. 35; no. 11; pp. 1939 - 1944
Main Authors: Dommershuijsen, Lisanne J., Darweesh, Sirwan K.L., Luik, Annemarie I., Kieboom, Brenda C.T., Koudstaal, Peter J., Boon, Agnita J.W., Ikram, M. Arfan, Ikram, M. Kamran, Bunnik, Eline M.
Format: Journal Article
Language:English
Published: Hoboken, USA John Wiley & Sons, Inc 01.11.2020
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Subjects:
Alpha‐synucleinopathy
Behavior disorders
Ethics
Eye movements
Humans
Medical ethics
Movement disorders
Parkinson Disease - diagnosis
Parkinson's disease
Population studies
REM sleep
REM sleep behavior disorder
REM Sleep Behavior Disorder - diagnosis
screening
Sleep disorders
Synucleinopathies
screening
Parkinson's disease
Alpha-synucleinopathy
ethics
REM sleep behavior disorder
ISSN:0885-3185, 1531-8257, 1531-8257
Online Access:Get full text
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Summary:ABSTRACT Clinical studies have shown that up to 90% of patients with idiopathic rapid eye movement sleep behavior disorder (RBD) will eventually be diagnosed with a clinical α‐synucleinopathy. Because of this high conversion rate, screening for RBD is often performed to identify eligible participants for studies aimed at elucidating the prodromal phase of α‐synucleinopathies. However, screening for RBD, especially in the general population, raises many ethical dilemmas. In light of the existing ethical literature and our experience in establishing a screening approach for RBD in the Rotterdam Study, we discuss ethical dilemmas when screening for RBD in population‐based studies. We conclude that informing study participants about the reason for invitation and the possible trajectory that lies ahead when participating is essential. However, participants should not be troubled unnecessarily by giving them detailed information about possible diagnoses or associated disease risks. © 2020 International Parkinson and Movement Disorder Society
Bibliography:The Rotterdam Study is supported by the Erasmus MC University Medical Center and Erasmus University Rotterdam; the Netherlands Organization for Scientific Research (NWO); the Netherlands Organization for Health Research and Development (ZonMw); the Research Institute for Diseases in the Elderly (RIDE); the Netherlands Genomics Initiative (NGI); the Ministry of Education, Culture and Science; the Ministry of Health, Welfare and Sports; the European Commission (DG XII); and the Municipality of Rotterdam. This study received further support from Stichting ParkinsonFonds.
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ISSN:0885-3185
1531-8257
1531-8257
DOI:10.1002/mds.28262