Genetic research into Alzheimer's disease: a European focus group study on ethical issues.
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
Anco
A
Department of Ethics, Philosophy and History of Medicine, Radboud University Nijmegen Medical Centre, the Netherlands. a.vandervorm@efg.umcn.nl
Rikkert
Marcel Olde
MO
Vernooij-Dassen
Myrra
M
Dekkers
Wim
W
D000368:Aged; D000544:Alzheimer Disease / Q000235:genetics*; D001294:Attitude to Health; D026688:Bioethical Issues; D005190:Family; D017144:Focus Groups; D036281:Genetic Research / Q000941:ethics*; D006801:Humans; D007258:Informed Consent / Q000941:ethics; D011287:Prejudice; D020458:Third-Party Consent / Q000941:ethics