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Consensus Statement on Genetic Research in Dementia

Department of Geriatrics, Radboud University Nijmegen Medical Centre, M.Olde-Rikkert{at}ger.umcn.nl

Anco van der Vorm, MBBS

Department of Ethics Philosophy and History of Medicine, Radboud University Nijmegen Medical Centre

Alistair Burns, MD, PhD

Department of Old Age Psychiatry, University of Manchester, Manchester, United Kingdom

Wim Dekkers, MD, PhD

Philipp Robert, MD, PhD

Centre Memoire de Ressources & de Recherche, CHU-Universite de Nice-Sophia Antipolis, Nice, France

Norman Sartorius, MD, PhD

International Association for the Improvement of Mental Health Programmes, Basle, Switzerland

Jacques Selmes, MD

EDCON, Madrid, Spain

Gabriela Stoppe, MD, PhD

Department of Old Age Psychiatry, Psychiatric University Hospital, Basel, Switzerland

Myrra Vernooij-Dassen, PhD

Center for Quality of Care Research Institute Alzheimer Centre Nijmegen, Radboud University Nijmegen Medical Centre, Nijmegen, Netherlands

Gunhild Waldemar, MD, PhD

Memory Disorder Research Group, Department of Neurology, Neuroscience Centre, Copenhagen University Hospital Rigshospitalet, Copenhagen, Denmark

In this article, the authors describe how the European Dementia Consensus Network developed a consensus on research ethics in dementia, taking into account the questions posed by the era of genetic research and its new research methods. The consensus process started with a Delphi procedure to analyze relevant stakeholders' positions by describing their statements on the possibilities and limitations of research into genetic determinants of Alzheimer disease and to describe and analyze the moral desirability of genetic research on Alzheimer disease. The conclusions drawn from the Delphi procedure fuelled the development of the consensus statement, which is presented in this paper. The consensus statement aims to stimulate ethically acceptable research in the field of dementia and the protection of vulnerable elderly patients with dementia from application of inadequate research methods or designs.

Key Words: Alzheimer disease • genetic research • ethics • dementia research

This version was published on June 1, 2008

American Journal of Alzheimer's Disease and Other Dementias®, Vol. 23, No. 3, 262-266 (2008)
DOI: 10.1177/1533317508317817


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