Ethics of dementia research
Ethical issues in practice
This report entitled “The Ethics of Dementia Research” provides a detailed discussion of some of the main ethical issues linked to carrying out dementia research in an ethical manner. It covers all kinds of research in the medical and social science domains. The recommendations at the end of each chapter are aimed at encouraging researchers to consider various ethical issues, some of which are not always immediately apparent.
The report is the result of a year’s work carried out by a very active working group not only with experience in carrying out or participating in dementia research but also with professional expertise in the field of bioethics, the development of medical drugs, old age psychiatry, psychology, acute geriatry, neurology, social studies and end-of-life care. In addition, the working group benefited from the practical experience and valuable insight into dementia of a person with dementia, two carers (one of whom was also a lay member of a research ethics committee) and two representatives from national Alzhei- mer Associations in the Czech Republic and Germany. I would therefore like to offer my sincere thanks to the members of the working group who were (in alphabetical order): Peter Annas, Angela Clayton Turner, Julie Fraser, Thomas Frühwald, Dianne Gove (Chair), Fabrice Gzil, Iva Holmerová, Sabine Jansen, James and Maureen McKillop, Carlo Petrini, Rasa Ruseckiene, Sandro Sorbi and Lieve Van den Block.
We hope that this report will be of interest to researchers, people taking part in research and anyone with an interest in ensuring that dementia research is carried out in an ethi- cal manner (e.g. those commissioning or funding research, ethics committees and Alz- heimer associations). Many of the issues addressed are fairly complex. Although we have tried to present a balanced portrayal of current debates, we accept that people may have different views and that what is considered ethical today might not be considered as such in years to come.
We hope that this report contributes in some way towards the ethical conduct of dementia research but also serves as a basis for further discussion and debate on the very important issues that have been raised. I hope that you find this report interesting and thought provoking, and would welcome your thoughts and reactions to any of the topics covered.
Heike von Lützau-Hohlbein
Last Updated: Thursday 29 March 2012