Alzheimer Disease: van der Vorm A

van der Vorm A, Rikkert MO, Vernooij-Dassen M, Dekkers W, Anonymous00037. · Department of Ethics, Philosophy and History of Medicine, Radboud University Nijmegen Medical Centre, the Netherlands. · Int J Geriatr Psychiatry. · Pubmed #17477450 No free full text.

Abstract: BACKGROUND: Nowadays, there is an increasing interest in the heritable aspects of Alzheimer's Disease (AD). The ethical implications of this kind of research are also attracting attention. However, relatively few open-ended qualitative studies have been carried out to study these aspects. OBJECTIVE: To explore and analyse ethical issues raised by genetic research into AD. METHODS: A modified focus group technique. RESULTS: Participants stressed the importance of relatives in genetic research and suggested a family consent procedure. The consent procedure ought to be more uniform within Europe and should allow for variation in the types of research being done. The long-term results of genetic research into AD are expected to be positive while the short-term results seem likely to be negative. The perception of AD as a disease could be changed by the results from genetic research into AD, and this could have effects at the individual level (feelings of guilt and responsibility for one's own health). CONCLUSIONS: (1) The role of the family in genetic AD research differs from its role in other biomedical research into AD. The development of a family consent procedure might solve some informed consent problems. (2) Negative social consequences of genetic AD research are expected in the short term, but there are hopes of positive consequences in the long term.

van der Vorm A, Vernooij-Dassen MJ, Kehoe PG, Olde Rikkert MG, van Leeuwen E, Dekkers WJ. · Radboud University Nijmegen Medical Centre, IQ Healthcare, Section of Ethics, Philosophy and History of Medicine, 114 IQ Healthcare, Nijmegen, The Netherlands. · J Med Ethics. · Pubmed #19181890 No free full text.

Abstract: BACKGROUND: Although genetic research into Alzheimer disease (AD) is increasing, the ethical aspects of this kind of research and the differences between ethical issues related to genetic and non-genetic research into AD have not yet received much attention. OBJECTIVES: (1) To identify and compare the five ethical issues considered most important by surveyed expert panellists in non-genetic and genetic AD research and (2) to compare our empirical findings with ethical issues in genetic research in general as described in the literature. Method: A modified Delphi study in two rounds RESULTS: Genetic and non-genetic research into AD generated an approximately equal number of topics with a considerable overlap. Different priorities in the ethics of both types of research were found. Genetic research raised new topics such as "confidentiality of genetic information" and "implications of research for relatives" which changes the impact and application of existing ethical topics such as "informed consent" and is judged to have more impact on both individuals and society. A difference with the results of more theoretical approaches on ethical aspects related to AD research was also found. CONCLUSIONS: Different priorities are given to ethical issues in genetic and non-genetic research. These arise partly because genetic research causes unique and new questions, mostly related to the position of family members and the status of and access to genetic information. Differences found between the results of our empirical study and the more theoretical literature, suggest an additional value for empirical research in medical ethics.

Olde Rikkert MG, van der Vorm A, Burns A, Dekkers W, Robert P, Sartorius N, Selmes J, Stoppe G, Vernooij-Dassen M, Waldemar G. · Department of Geriatrics, Radboud University Nijmegen Medical Centre, Nijmegen, Netherlands. · Am J Alzheimers Dis Other Demen. · Pubmed #18509105 No free full text.

Abstract: 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.