Premium
Genetic research into Alzheimer's Disease: a European focus group study on ethical issues
Author(s) -
van der Vorm Anco,
Rikkert Marcel Olde,
VernooijDassen Myrra,
Dekkers Wim
Publication year - 2008
Publication title -
international journal of geriatric psychiatry
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.28
H-Index - 129
eISSN - 1099-1166
pISSN - 0885-6230
DOI - 10.1002/gps.1825
Subject(s) - feeling , informed consent , disease , psychology , qualitative research , research ethics , perception , social research , focus group , social psychology , developmental psychology , clinical psychology , psychiatry , medicine , alternative medicine , sociology , pathology , social science , neuroscience , anthropology
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. Copyright © 2007 John Wiley & Sons, Ltd.