Advance directives in dementia research: The opinions and arguments of clinical researchers − an empirical study

Research Ethics

Volumn 11, Issue 1, 2015, Pages 4-14

  Jongsma, Karin ^a   van de Vathorst, Suzanne ^a  

^a ERASMUS MEDICAL CENTER   (Netherlands)

Author keywords

advance directives; dementia; informed consent; research ethics; vulnerable populations

Indexed keywords

EID: 84938544976     PISSN: 17470161     EISSN: 20476094     Source Type: Journal    
DOI: 10.1177/1747016114523422     Document Type: Article

References (27)

1. Alzheimer Europe (2009) Research with people with dementiahttp://www.alzheimer-europe.org/policy-in-practice/our-opinion-on/research-with-people-with-dementia (accessed 4 December 2012).
2. J.M.Atkinson (2007) Protecting or empowering the vulnerable? Mental illness, communication and the research process. Research Ethics Review3(4): 134–138.
3. T.L.BeauchampJ.F.Childress (2009) Principles of Biomedical Ethics (6th edn). New York: Oxford University Press.
4. R.Berghmans (1998) Advance directives for non-therapeutic dementia research: Some ethical and policy considerations. Journal of Medical Ethics24: 32–37.
5. C.J.BondK.Lowton (2011) Geriatricians’ views of advance decisions and their use in clinical care in England: qualitative study. Age Ageing40: 450–456.
6. C.Butterworth (2005) Ongoing consent to care for older people in care homes. Nursing Standard19(20): 40–45.
7. Convention for the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine. Convention on Human Rights and Biomedicine of the Council of Europe, Oviedo, 4April1997.
8. M.M.CorradaR.BrookmeyerA.Paganini-HillD.BerlauC.H.Kawas (2010) Dementia incidence continues to increase with age in the oldest old: The 90 study. Annals of Neurology67(1): 114–121.
9. M.De BoerR.DröesC.Jonker. (2012) Thoughts on the future: The perspectives of elderly people with early stage Alzheimer’s disease and the implications for advance care planning. AJOB Primary Research3: 14–22.
10. J.Dewing (2008) Process consent and research with older persons living with dementia. Research Ethics Review4(2): 59–64.
11. European Parliament and Council Directive 2001/20/EC (2001) Approximation of the laws, regulations and administrative provisions of the Member States relating to the implementation of good clinical practice in conduct of clinical trials on medical products for human use. European Union.
12. International Conference on Harmonisation of Technical Requirements for Registration of Pharmaceuticals for Human Use. Good Clinical Practice Guidance of 1996 drawn up by the ICH. CPMP/ICH/135/95, 1 May 1996.
13. J.KarlawishD.CasarettB.James (2002) Alzheimer’s disease patients’ and caregivers’ capacity, competency, and reasons to enroll in an early-phase Alzheimer’s disease clinical trial. Journal of the American Geriatrics Society50(12): 2019–2024.
14. J.KarlawishS.Y.KimD.Knopman. (2008) The views of Alzheimer disease patients and their study partners on proxy consent for clinical trial enrolment. The American Journal of Geriatric Psychiatry16: 240–247.
15. J.KarlawishJ.RubrightD.Casarett. (2009) Older adults’ attitudes toward enrolment of non-competent subjects participating in Alzheimer’s disease. American Journal of Psychiatry166: 182–198.
16. N.C.MansonO.O’Neill (2007) Rethinking Informed Consent in Bioethics. New York: Cambridge University Press.
17. P.MuthappanH.ForsterD.Wendler (2005) Research advance directives: Protection or obstacle?American Journal of Psychiatry162: 2389–2391.
18. R.Pierce (2010) A changing landscape for advance directives in dementia research. Social Science & Medicine70(4): 623–630.
19. D.L.RosensteinF.G.Miller (2008) Research involving those at risk for impaired decision-making capacity. In: (eds) The Oxford Textbook of Clinical Research Ethics. New York: Oxford University Press: 437–445.
20. J.SeymourM.GottG.Bellamy. (2004) Planning for the end of life: The views of older people about advance care statements. Social Science & Medicine59: 57–68.
21. F.StewardC.GoddardR.Schiff. (2011) Advanced care planning in care homes for older people: A qualitative study on the views of staff and families. Age Ageing40: 330–335.
22. C.B.StockingG.W.HoughamD.D.Danner. (2006) Speaking of research advance directives: Planning for future research participation. Neurology66: 1361–1366.
23. B.Van OorschotA.Simon (2006) Importance of the advance directive and the beginning of the dying process from the point of view of German doctors and judges dealing with guardianship matters: Results of an empirical survey. Journal of Medical Ethics32: 623–626.
24. J.WarnerE.Nomani (2008) Giving consent in dementia research. The Lancet372(9634): 183–185.
25. D.WendlerR.A.MartinezD.Fairclough. (2002) Views of potential subjects toward proposed regulations for clinical research with adults unable to consent. American Journal of Psychiatry159: 585–591.
26. T.Wengraf (2001) Qualitative Research Interviewing. London: SAGE.
27. World Medical Association Declaration of Helsinki (2008) Ethical Principles for Medical Research Involving Human Subjects. Adopted in 1964 and last amended in 2008. World Medical Association.