Genetic research into Alzheimer's disease: a European focus group study on ethical issues - PubMed (original) (raw)
Review
Genetic research into Alzheimer's disease: a European focus group study on ethical issues
Anco van der Vorm et al. Int J Geriatr Psychiatry. 2008 Jan.
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.
Similar articles
- Ethical aspects of research into Alzheimer disease. A European Delphi Study focused on genetic and non-genetic research.
van der Vorm A, Vernooij-Dassen MJ, Kehoe PG, Olde Rikkert MG, van Leeuwen E, Dekkers WJ. van der Vorm A, et al. J Med Ethics. 2009 Feb;35(2):140-4. doi: 10.1136/jme.2008.025049. J Med Ethics. 2009. PMID: 19181890 - Ethical issues arising from the participation of children in genetic research.
Burke W, Diekema DS. Burke W, et al. J Pediatr. 2006 Jul;149(1 Suppl):S34-8. doi: 10.1016/j.jpeds.2006.04.049. J Pediatr. 2006. PMID: 16829241 - Experts' opinions on ethical issues of genetic research into Alzheimer's disease: results of a Delphi study in the Netherlands.
van der Vorm A, van der Laan AL, Borm G, Vernooij-Dassen M, Olde Rikkert M, van Leeuwen E, Dekkers W. van der Vorm A, et al. Clin Genet. 2010 Apr;77(4):382-8. doi: 10.1111/j.1399-0004.2009.01323.x. Epub 2009 Dec 10. Clin Genet. 2010. PMID: 20002460 - Genetics in dental practice: social and ethical issues surrounding genetic testing.
Gettig E, Hart TC. Gettig E, et al. J Dent Educ. 2003 May;67(5):549-62. J Dent Educ. 2003. PMID: 12809190 Review. - Do caregivers' experiences correspond with the concerns raised in the literature? Ethical issues relating to anti-dementia drugs.
Huizing AR, Berghmans RL, Widdershoven GA, Verhey FR. Huizing AR, et al. Int J Geriatr Psychiatry. 2006 Sep;21(9):869-75. doi: 10.1002/gps.1576. Int J Geriatr Psychiatry. 2006. PMID: 16955453 Review.
Cited by
- Health Outcome Prioritization in Alzheimer's Disease: Understanding the Ethical Landscape.
McKeown A, Turner A, Angehrn Z, Gove D, Ly A, Nordon C, Nelson M, Tochel C, Mittelstadt B, Keenan A, Smith M, Singh I. McKeown A, et al. J Alzheimers Dis. 2020;77(1):339-353. doi: 10.3233/JAD-191300. J Alzheimers Dis. 2020. PMID: 32716354 Free PMC article. Review. - Consensus statement on genetic research in dementia.
Olde Rikkert MG, van der Vorm A, Burns A, Dekkers W, Robert P, Sartorius N, Selmes J, Stoppe G, Vernooij-Dassen M, Waldemar G. Olde Rikkert MG, et al. Am J Alzheimers Dis Other Demen. 2008 Jun-Jul;23(3):262-6. doi: 10.1177/1533317508317817. Epub 2008 May 28. Am J Alzheimers Dis Other Demen. 2008. PMID: 18509105 Free PMC article. - Considerations in the construction of an instrument to assess attitudes regarding critical illness gene variation research.
Freeman BD, Kennedy CR, Bolcic-Jankovic D, Eastman A, Iverson E, Shehane E, Celious A, Barillas J, Clarridge B. Freeman BD, et al. J Empir Res Hum Res Ethics. 2012 Feb;7(1):58-70. doi: 10.1525/jer.2012.7.1.58. J Empir Res Hum Res Ethics. 2012. PMID: 22378135 Free PMC article. - Why did an effective Dutch complex psycho-social intervention for people with dementia not work in the German healthcare context? Lessons learnt from a process evaluation alongside a multicentre RCT.
Voigt-Radloff S, Graff M, Leonhart R, Hüll M, Rikkert MO, Vernooij-Dassen M. Voigt-Radloff S, et al. BMJ Open. 2011 Aug 9;1(1):e000094. doi: 10.1136/bmjopen-2011-000094. BMJ Open. 2011. PMID: 22021759 Free PMC article.
Publication types
MeSH terms
LinkOut - more resources
Full Text Sources
Medical