Advance consent, critical interests and dementia research

Journal of Medical Ethics

Volumn 41, Issue 8, 2015, Pages 701-707

  Buller, Tom ^a  

^a ILLINOIS STATE UNIVERSITY   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

COMPLICATION; DECISION MAKING; DEMENTIA; ETHICS; HUMAN; INFORMED CONSENT; LIVING WILL; MENTAL CAPACITY; PATIENT RIGHT; PERSONAL AUTONOMY; PSYCHOLOGY; RESEARCH ETHICS; TERMINAL CARE;

ADVANCE DIRECTIVES; DECISION MAKING; DEMENTIA; ETHICS, RESEARCH; HUMANS; INFORMED CONSENT; MENTAL COMPETENCY; PATIENT RIGHTS; PERSONAL AUTONOMY; TERMINAL CARE;

EID: 84938519667     PISSN: 03066800     EISSN: 14734257     Source Type: Journal    
DOI: 10.1136/medethics-2014-102024     Document Type: Article

References (21)

1. Alzheimer' Association. 2013 Alzheimer's Disease Facts and Figures. http://www.alz. org/alzheimers_disease_facts_and_figures.asp#quickFacts (accessed 3 Jan 2014).
2. Alzheimer's Disease International. Dementia Statistics. http://www.alz.co.uk/research/statistics (accessed 3 Jan 2014).
3. Title 45 Public Welfare Department of Health and Human Services, Part 46 Protection of Human Subjects. http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.html (accessed 4 Jan 2014).
4. Mental Capacity Act, 2005.
5. Canadian Institutes of Health Research, National Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada. Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. December 2010, Article 3.10.
6. Mental Capacity Act, 2005; Part 1 Section 33:b.i.
7. Medicines for Human Use (Clinical Trials) Regulations 2004, Schedule 1, Part 3.
8. Lötjönen S. Medical research on patients with dementia-the role of advance directives in European legal instruments. Eur J Health Law 2006; 13:235-61.
9. Slaughter S, Cole D, Jennings E, et al. Consent and assent to participate in research from people with dementia. Nurs Ethics 2007;14:27-40.
10. Stocking CB, Hougham GW, Danner DD, et al. Speaking of research advance directives: planning for future research participation. Neurology 2006; 66:1631-6.
11. Appelbaum PS. Consent in impaired populations. Curr Neurol Neurosci Rep 2010;10:367-73.
12. Pierce R. A changing landscape for advance directives in dementia research. Soc Sci Med 2010;70:623-30.
13. Dresser R. Missing persons: legal perceptions of incompetent patients. Rutgers Law Rev 1994;46:609-719
14. Dresser R, Whitehouse PJ. The incompetent patient on the slippery slope. Hastings Cent Rep 1994;24:6-12
15. Berghmans RL. Advance directives for non-therapeutic dementia research: some ethical and policy considerations. J Med Ethics 1998;24:32-7.
16. Dworkin R. Life's dominion: an argument about abortion, euthanasia and individual freedom. New York, NY: Vintage Books, 1994.
17. Nelson JL. Hippocrates' Maze: Ethical Explorations of the Medical Labyrinth. New York, NY: Rowan and Littlefield, 2003:44.
18. Kim SYH, Kim HM, McCallum C, et al. What do people at risk for Alzheimer's disease think about surrogate consent for research? Neurology 2005;65:1395-401.
19. Ayalon L. Willingness to participate in Alzheimer disease research and attitudes towards proxy-informed consent: results from the Health and Retirement Study. Am J Geriatr Psychiatry 2009;17(1):65-74.
20. Harris J. Scientific research is a moral duty. J Med Ethics 2005;31(4):242-8.
21. Saks ER, Dunn LB, Wimer J, et al. Proxy consent to research: the legal landscape. Yale J Health Policy Law Ethics 2008;VIII:37-92.