The dementia ethics research project
2011: Ethics of dementia research
This document is the second report produced by Alzheimer Europe in collaboration with a team of experts in the framework of the European Dementia Ethics Network (EDEN), which was set up in 2009. The aim of EDEN is to discuss ethical issues of relevance to people with dementia within a multidisciplinary group of experts including people with dementia and carers in order to present the ethical issues related to specific topics for further reflection, along with a set of recommendations reflecting the position of Alzhei- mer Europe. Each year, Alzheimer Europe will address a different topic. In 2010, recom- mendations were produced on the ethical issues linked to the use of assistive technology for and by people with dementia. The topic of this year’s report is the ethical issues linked to dementia research.
The overall goal of the working group was to produce recommendations and a position on ethical dementia research through a process of reflection and group discussion. The group had three specific objectives:
- To provide an overview of past and current ethical debates about issues linked to various aspects of dementia research,
- To explain its position,
- To provide recommendations, where possible, on a range of issues linked to demen- tia research.
It is clear that such recommendations need to be applied to particular situations involving particular people because situations and people develop and change over time. For exam- ple, the ethical issues linked to the use of advance directives for research have only come into being in recent years as before that, such directives did not, and in many countries within Europe still do not, exist. Attitudes also change and thanks to the progress of both the dementia and the disability movement, people with dementia are no longer consid- ered as passive recipients of care and treatment but rather as active participants with the same rights as other members of society. Such rights include the right to be treated with respect, the right to privacy and protection and also the right to participate in research.
These recommendations were developed within a particular cultural context and his- torical period. Such debates do not occur once and for all, resulting in clear instructions on how to behave thereafter. Hopefully, the paper will promote further discussion and encourage people to approach dementia research in a thoughtful and morally respon- sible way, based on an understanding of the main ethical issues involved, even or espe- cially in the absence of clear legal obligations.
The members of the working group to whom Alzheimer Europe is immensely grateful for developing these recommendations and contributing towards the position of Alzheimer Europe are (in alphabetical order):
Dr Peter Annas, Senior Research Scientist, PhD. and AstraZeneca’s representative in the PharmaCog project (and co-leader of the Ethics work package in the same project).
Ms Angela Clayton-Turner, volunteer, carer and involved in selecting, monitoring and disseminating research for the Alzheimer’s Society and in ethical procedures for brain donations for research. She is also a lay member of her local Research Ethics Committee.
Ms Julie Fraser, Editor, Dementia in Europe Magazine.
Dr Thomas Frühwald, Senior physician of the Department of Acute Geriatry of the Hietzing Hospital in Vienna, Austria. Committee member of the Geriatric Medicine Section of the European Union of Medical Specialists. Board member (Vice President) of the Austrian Society of Geriatrics and Gerontology.
Ms Dianne Gove, Information Officer at Alzheimer Europe, Luxembourg.
Dr Fabrice Gzil, Head of Social Studies Department, Fondation Médéric Alzheimer in Paris, France. He recently produced ethical guidelines for researchers interested in obtaining funding for social sciences research.
Associate Professor Iva Holmerová, Charles University, Centre of Gerontology in Prague, Czech Republic.
Ms Sabine Jansen, Executive Director of the Deutsche Alzheimer Gesellschaft e.V. (the German Alzheimer Society).
Mr James McKillop (MBE) and Mrs Maureen McKillop. James has taken part in several research studies and has been a member of several working groups within Alzheimer Europe (including the last ethics project). He is a founding member of the Scottish Dementia Working Group. James has dementia and Maureen is his wife and carer.
Dr Carlo Petrini, Head of the Bioethics Unit of the National Institute of Health in Rome, Italy.
Dr Rasa Ruseckiene, Consultant in adult and old age psychiatry, therapist, work experi- ence in UK psychiatric hospitals, involved in project to promote psychiatric services in Lithuania.
Prof. Sandro Sorbi, Professor of Neurology, Department of Neurological Science and Psy- chiatry at the University of Florence, Italy. He is responsible for coordinating the new EFNS guidelines on dementia with a section on the ethics of research.
Prof. Dr Lieve Van den Block, senior founding member of the End-of-life care Research Group of Ghent University and the Vrije Universiteit Brussel and Professor of Communication and Education in Family Medicine at the Vrije Universiteit Brussel, Belgium.
Alzheimer Europe would also like to thank Prof. Mary Marshall (Emeritus Professor at the University of Stirling, Scotland) for commenting on the draft texts.
The aim of the next chapter is to set the scene by providing a brief overview of some of the important concepts linked to the topic of ethical dementia research. We explain, for example what we mean by research, what kinds of research are carried out, what we mean by dementia research and ethical dementia research and how ethical principles and models can be applied to specific issues like dementia research.
The remainder of the report is structured firstly, around key relevant issues and secondly, around a few specific types of research. Each of these chapters has three sections: 1. a brief introduction about the issue or area of research, 2. a discussion/presentation of the main ethical issues identified and 3. a list of recommendations.
The structure is designed to help the reader find his/her way through the text, maybe jumping to some sections of particular interest and then back to others, rather than reading the report from start to finish as one might read a novel. Many of the issues discussed are relevant to more than one section of the report. To avoid too much repetition, they have been largely confined to one topic area but this is admittedly an artificial separation of related issues.
The report is targeted at a wide audience covering everyone who might be directly or indirectly involved in research. Although these issues may be of interest to people with dementia themselves, this particular format and style of presentation may not be ideally suited to people with dementia who might have some difficulties with language, concentration and memory. For this reason, a summary of the main recommendations of relevance to their possible participation in research will be summarised and put on the Alzheimer Europe website.
Last Updated: Thursday 29 March 2012