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2011: Ethics of dementia research

Abbot, A. (2011), Dementia: a problem for our age.Nature, 475, S2-S4. Accessed online on 25 September 2011 at.

Adamis, D., Treloar, A., Martin, F.C. and Macdonald, A.J.D. (2010), Ethical research in delirium: arguments for including decisionally incapacitated subjects.Sci Eng Ethics, 16, 169-174

Addington-Hall, J. (2002), Research sensitivities to palliative care patients.European Journal of Cancer Care, 11, 220-224

Addington-Hall, J.M. and Higginson, I.J. (eds) (2001).Palliative care for non-cancer patients, Oxford University Press (cited in above document)

Adamis, D., Martin, F.C., Treloar, A. and Macdonald, A.J.D. (2005), Capacity, consent, and selection bias in a study of delirium.Journal of Medical Ethics, 31, 137-143

Agarwal, M.R., Ferran, J., Ost, K. and Wilson, K.C.M. (1996), Ethics of informed consent in dementia research – the debate continues.International Journal of Geriatric Psychiatry, 11, 801-806

Aita, M. and Richer, M-C. (2005), Essentials of research ethics for healthcare professionals.Nursing and Health Sciences, 7, 119-125

Al Bareeq, J.M. and Fedorowicz, Z. (2008), The impact of abuse and historical perspective of medical ethics: a moral foundation for human research.Bahrain Medical Bulletin, 30, 3, 1-11

Albert, T. and Wager, E. (2003),How to handle authorship disputes: a guide for new researchers. The COPE report

Alexander, S.J. (2010), “As long as it helps somebody”: why vulnerable people participate in research.International Journal of Palliative Nursing, 16, 4, 173- 178

Allbutt, H. and Masters, H. (2010), Ethnography and the ethics of undertaking research in different mental healthcare settings.Journal of Psychiatric and Mental Health Nursing, 17, 210-215

Alzheimer’s Association (1997),Ethical issues in dementia research (with special emphasis on “informed consent”)– Position Paper. Accessed online on 23 November 2011 at:

Alzheimer Europe (2008),End-of-life care for people with dementia,Alzheimer Europe

Alzheimer Europe (2009),Dementia in Europe Yearbook 2009 with a focus on healthcare and decision-making in dementia. Alzheimer Europe

Alzheimer Europe (2011), Website section on dementia,

Alzheimer Europe (2011),The value of knowing: Findings of Alzheimer Europe’s five country survey on public perceptions of Alzheimer’s disease and views on the value of diagnosis,Alzheimer Europe

American Geriatrics Society (2000), AGS position statement: genetic testing for late-onset Alzheimer’s disease. Originally accessed online (but not currently available) at:

American Psychiatric Association (2010),Neurocognitive disorders. Accessed online on 18 November 2011 at:

Annas, G.L. and Glantz, L.H. (1986), Rules for research in nursing homes.New England Journal of Medicine, 315, 1157-1158

Appelbaum, P.S. and Grisso, T. (1988), Assessing patients’ capacities to consent to treatment.New England Journal of Medicine, 319, 25, 1635-1638

Appelbaum, P.S. and Grisso, T. (2001),MacCAT-CR: The MacArthur Competence Assessment Tool for Clinical Research, Professional Resource Press

Atkinson, J.M. (2007), Advance directives in mental health: theory, practice and ethics.Jessica Kingsley Publishers

Backlar, P. (1998), Advance directives for subjects of research who have fluctuating cognitive impairments due to psychiatric disorders (such as schizophrenia).Community Mental Health Journal,34, 229-240

Bamford, C. and Bruce, E. (2000), Defining the outcomes of community care: the perspectives of older people with dementia and their carers.Ageing and Society, 20, 453-570

Barnett, E. (2000),Including the person with dementia in designing and delivering care. I need to be Me!Jessica Kingsley Publishers, London

Bartlam, B., Lally, F. and Crome, P. (2010),The PREDICT study: increasing the participation of the elderly in clinical trials. The opinions of patients and carers: Lay report. Keele University

Bartlett, H. and Martin, W. (2002), Ethical issues in dementia care research. In: (Ed.) Wilkinson, H.The perspectives of people with dementia. Jessica Kingsley Publishers, London, 47-61

Baumrind, D. (1976),Nature and definition of informed consent in research involving deception.Accessed online on 14 July 2011 at: (23-11)

Baumrind, D. (1964), Some thoughts on ethics of research: after reading Milgram’s “behavioral study of obedience”.American Psychologist, 19, 6, 421-423

Beauchamp, T, Childress, J.F. (2008), Principles of biomedical ethics(6th ed., 1st ed: 1978). Oxford and New York: Oxford University Press

Benham, B. (2008), The ubiquity of deception and the ethics of deceptive research.Bioethics, 22, 3, 147-156

Berghmans, R.L.P. and ter Meulen, R.H.J. (1995), Ethical issues in research with dementia patients.International Journal of Geriatric Psychiatry, 10, 647-651

Berghmans, R.L.P. (1998), Advance directives for non-therapeutic dementia research: some ethical and policy considerations.Journal of Medical Ethics, 24, 32-37

Beswick, A., Burke, M., Shlomo, Y.B. and Dieppe, P (2008),Predict: increasing the participation of elderly in clinical trials. Workpackage 1: literature review.PREDICT

Blanchard, F. (2008),Alzheimer: the question of ethics - Section III: Research. Translation of Alzheimer, l’éthique en questions, sous la direction de F. Blanchard, Paris, DGS/France Alzheimer/AFDHA

Bradburn, J. and Maher, J. (2005), user and carer participation in research in palliative care.Palliat Med, 19, 2, 91-92

Brains for Dementia Research website. Consulted online on 9 November 2011 at:

Bramstedt, K. A. (2003), Questioning the decision-making capacity of surrogates.Internal Medicine Journal, 33, 257-259

Bravo, G., Paquet, M and Dubois, M.F. (2003), Opinions regarding who should consent to research on behalf of an older adult suffering dementia.Dementia: the International Journal of Social Research and Practice, 2, 1 , 49-65

Brodaty, H. (2011), Presentation/debate at the IPA conference involving arguments for and against the benefit of the new criteria for patients  in clinical practice.International Psychogeriatrics Association, 6-9 September 2011.

Brody, E., Kleberman, M., Lawton, M., & Silverman, H. (1971), Excess disabilities of mentally impaired aged: Impact of individualized treatment.The Gerontologist,1, 2,124-133.

Brudney, D. (2009), Choosing for another: beyond autonomy and best interets.Hastings Cent Rep, 39, 31-27

Buber, M. (1970),I and Thou.New York: Touchstone.

Buchanan, A. (1988), Advance directives and the personal identity problem.Philosophy and Public Affairs, 17, 277-302

Buchanan, A.E. and Brock, D.W. (1990),Deciding for others: the ethics of surrogate decision making. Cambridge University Press

Buckles, V.D., Powlishta, K.K., Palmer, J.L., Coats, M., Hosto, T., Buckley, A. and Morris, J.C. (2003), Understanding of informed consent by demented individuals.Neurology, 62, 1662-1666

Buller, D.B. and Burgoon, J.K. (1996), Interpersonal Deception Theory.Communication Theory, 6, 3, 203–242

Casarett, D.J. and Karlawish, J.H.T (2000), Are special ethical guidelines needed for palliative care research?Journal of Pain and Symptom Management, 20, 2, 130-139

Cassel, C.K. (1985), Research in nursing homes. Ethical issues.Journal of the American Geriatric Society, 33, 795-799

Centers for Disease Control and Prevention (2011),US public health service syphilis study at Tuskegee. Internet article accessed online on 25 September 2011 at:

Cherubini, A., Del Signore, S., Ouslander, J., Demla, T. and Michel, J.-P (2010), Fighting against age discrimination in clinical trials.Journal of the American Geriatrics Society, 58, 9, 1791-1796

Childress, J.F., Faden, R.R., Gaare, R.D. et al. (2002), Public health ethics: mapping the terrain.J Law Med Ethics, 30, 170-178. Downloadable at:

Chiu, H. (2011), Presentation/debate at the IPA conference involving arguments for and against the benefit of the new criteria for patients  in clinical practice.International Psychogeriatrics Association, 6-9 September 2011.

Choo, V. (1994), Gaps in UK research into elderly.Lancet, 344, 745

Christensen, L. (1988), Deception in psychological research: When is its use justified?Personality and Social Psychology Bulletin, 14, 4, 664-675

Clare, L. (2003),Constructing grounded theory: a practical guide through qualitative analysis.Sage Publications, Los Angeles

Cook, A. (2003), Using video to include the experiences of people with dementia in research.Research, Policy and Planning, 32, 2, 23-32

Coughlin, S.S. (2006), Ethical issues in epidemiologic research and public health practice. Emerging Themes in Epidemiology, 3, 16. Downloadable at:

Covinsky, K. (2011),Caution on diagnosing preclinical Alzheimer’s disease.Bioethics Forum Blog, Accessed on 17 July 2011 at:

Covinsky, K. (2011),The (Ir)relevance of medical research to older patients. GeriPal (A geriatrics and palliative care blog). Accessed online on 17 October 2011 at:

Cowdell, F. (2006), Preserving personhood in dementia research: a literature review.International Journal of Older People Nursing, 1, 85-94

Cox, S. and Cook, A. (2007), Caring for people with dementia at the end of life. InPalliative care for older people in care homes, Hockley, J. and Clark, D., McGraw-Hill Higher Education

Damasio, A. (2000),The feelings of what happens: body emotion and the making of consciousnes, London, Vintage

Davis, R. (1989).My journey into Alzheimer's disease.Bucks: Scripture Press.

Day, A.M., James, I.A., Meyer, T.M. and Lee, D.R. (2011), Do people with dementia find lies and deception in dementia care acceptable?Aging and Mental Health, 15, 7, 822-829

Dench, S., Iphofen, R. and Huws, U. (2004),An EU code of ethics for socio-economic research, The Institute for Employment Studies. Accessed online on 1 April 2011 at:

Department of Health and Human Services (2011),Human subjects research protections: enhancing protections for research subjects and reducing burden, delay, and ambiguity for investigators. Accessed online on 25 October 2011 at:

Dewing, J. (2007), Participatory research: a method for process consent for people who have dementia,Dementia, 6, 1, 11-25

Dow, A.E. (2009),Genetic exceptionalism and the precautionary principle. Accessed online on 27 October 2011 at:

DuBois, J.M. (2008),Ethics in mental health research: principles, guidance and cases.Oxford University Press

Dunn, L.B., Nowrangi, M. A., Palmer, B.W., Jeste, D.V. and Saks, E.R. (2006), Assessing decisional capacity for clinical research or treatment: a review of instruments.American Journal of Psychiatry, 163, 1323-1334

Dresser, R.S. (1981). Deception research and the HHS final regulations.IRB: Ethics and Human Research, 3,4, 3-4.

Dworkin, R. (1994), Life’s dominion; an argument about abortion, euthanasia and individual freedom, 1st Vintage Books

Ebbesen, M. and Pedersen, B.D. (2008), The principle of respect for autonomy – concordant with the experience of oncology physicians and molecular biologists in their daily work?BMC Medical Ethics, 9, 5, 1-12

Edwards, S.J.L., Lilford, R.J. and Hewison, J (1998), The ethics of randomized controlled trials from the perspectives of patients, the public and healthcare professionals. British Medical Journal, 317, 1209-1212

Eisenstein, M. (2011), Genetics: finding risk factors,Nature, 475, S20-S22, issue 7355, published online

EMA (European Medicines Agency) (1994),ICH Topic E 7 – studies in support of special populations: geriatrics (CPMP/ICH/379/95), European Medicines Agency

EMA (European Medicines Agency) (2001),EMA/CPMP position statement on the use of placebo in clinical trials with regard to the revised declaration of Helsinki, European Medicines Agency

Emanuel, E., Wendler, D., Grady, C. (2000), What makes clinical research ethical?JAMA, 283, 2701-2711

Emanuel, E.J. and Menikoff, J. (2011), Reforming the regulations governing research with human subjects.The New England Journal of Medicine, 10.1056/NEJMsb1106942

Epley, N. and Huff, C. (1998), Suspicion, affective response and educational benefit as a result of deception in psychology research.PSPB, 24, 7, 759-768

European Forum for Good Clinical Practice (EFGCP) (2012),Medical research for and with older people in Europe: proposed guidance for ethical aspects. Final draft document

Fawcett, J. and Garity, J. (2009), Chapter 11: Evaluation of procedures for protecting research participants. In Davis, F.A.,Evaluating research for evidence-based nursing, 209-224

Feinberg, J. (1970),Doing and deserving. Essays in the theory of responsibility. Princeton University Press, New Jersey

Fisher, C.B. (2006),Paper three: relational ethics and research with vulnerable populations. Online ethics center for engineering, National Academy of Engineering. Accessed online on 3 August 2011 at:

Fisk, J.D., Beattie, B.L. and Donnelly, M. (2007), Ethical considerations for decision making for treatment and research participation.Alzheimer’s and Dementia  3, 411-417

Fisk, M. and Wigley, V. (2000), Accessing and interviewing the oldest old in care homes.Quality in ageing – policy, practice and research, 1, 1, 27-33

Fondation Médéric Alzheimer (2011),Cadre éthique des travaux de recherche menés et soutenus par la Fondation Médéric Alzheimer. Accessible online at:

Fry, S.T. and Veatch, R.M. (2006),Case studies in nursing ethics. Jones and Bartlett Publishers

Gale Encyclopedia of Public Health (2011), Epidemiology. Accessed online on 1 November 2011 at:

Giaccone, G., Arzberger, T., Alafuzoff, I. et al. (2011), New lexicon and criteria for the diagnosis of Alzheimer’s disease.The Lancet Neurology, 10, 4, 298-299

Glannon, W. (2006), Phase I oncology trials: why the therapeutic misconception will not go away.Journal of Medical Ethics, 32, 252-255

Goffman, E. (1959).The presentation of self in everyday life.First Anchor Books Edition.

Goldsmith, M. (2002),Hearing the voice of people with dementia: opportunities and obstacles, Jessica Kingsley Publishers

Goodfellow, S., Pryor, A.E. and Pryor, B.S. (2003) The Oxford companion to the body: personhood, Oxford University Press. (Abstract accessed online on 9 August 2011 at:

Goodman, R.A. and Buehler, J.W. (1996), Field epidemiology defined. InField Epidemiology. (Ed.) Gregg, MB, Dicker, R and Goodman, RA., New York, Oxford University Press, 3-7

Gouldner, A.W. (1960), The norm of reciprocity: a preliminary statement.American Sociological Review, 25, 161-178

Graham, N. and Warner, J. (2009),Understanding Alzheimer’s disease and other dementias.The British Medical Association

Hadjistavropoulos, T. and Smythe, W.E. (2001), Elements of risk in qualitative research.Ethics and Behavior, 11, 2, 163-174

Hamann, J., Bronner, K., Margull, J., Mendel, R., Diehl-Schmid, J., Bühner, M., Klein, R., Schneider, A., Kurz. A. and perneczky, R. (2011), Patient participation in medical and social decisions in Alzheimer’s disease.J Am Geriatr Soc, 59, 2045-2052

Heait, A., Gross, C.P., Krumholz, H.M.  (2002), Representation of the elderly, women and minorities in heart failure clinical trials.Arch. Intern. Med.,162, 1682-1688

Health Canada (2007), Science and research: guiding principles. Accessed online on 10 August 2011 at: http:///

Heath, S.B. (1995), Race, ethnicity and the defiance of categories. In W.D. Hawley and A.W. Jackson (eds.),Toward a common destiny: improving race and ethnic relations in America.Jossey-Bass Publishers, 39-70

Hellström, I., Nolan, M., Nordenfelt, L. And Lundh, U. (2007), Ethical and methdological issues in interviewing persons with dementia.Nursing Ethics, 14, 5, 608-619

Hertwig, R. and Ortmann, A. (2008), Deception in experiments: revisiting the arguments in its defense.Ethics and Behavior, 18, 1, 59-92

Holt, R., Siddiqi, N. and Young, J. (2008), The ethics of consent in delirium studies.Journal of Psychosomatic Research, 65, 283-287

Hodgkinson, M. (2007), Not being clear about authorship is lying. Journalology: sciences publishing trends, ethics, peer review and open access. Accessed online on 8 November 2011 at:

Holmerová, I., Jurašková, B., Kalvach, Z., Rohanová, E., Rokosová, M. and Vaňková, H. (2007), Dignity and palliative care in dementia.The Journal of Nutrition,Health and Aging, 11, 6, 489-494

Holzer, J.C., Gansler, D.A., Moczynski, N.P. et al. (1997), Cognitive functions in the informed consent evaluation process: a pilot study.J Am Acad Psychiatry Law, 25, 4, 531-540

Horton, R. (2004), Rediscovering human dignity,The Lancet, 364, 1081-1085

Hospice Information Service (2001),Directory of hospice and palliative care services in the United Kingdom and Republic of Ireland, Hospice, Information Service at St Christopher’s London

Hougham, G. W. (2005), Waste not, want not: cognitive impairment should not preclude research participation.The American Journal of Bioethics, 5, 1, 36-37

Hubbard, G., Downs, M.G. and Tester, S (2003), Including older people with dementia in research: challenges and strategies.Aging & Mental Health, 7, 5, 351-362

Hulko, W. (2004), Social science perspectives on dementia research: intersectionality. In Innes, A., Archibold, C. and Murphy, C. (Eds.),Dementia and social inclusion: marginalised groups and marginalised areas of dementia research, care and practice. Jessica Kingsley Publishers, London

Hurst, S.A. (2008), Vulnerability in research and health care; describing the elephant in the room?Bioethics, 22, 4, 191-202

Institute of Medicine of the National Academies (2009),Initial national priorities for comparative effectiveness research, The National Academies Press, Washington DC

Innes, A., Archibold, C. and Murphy, C. (Eds.) (2004),Dementia and social inclusion: marginalised groups and marginalised areas of dementia research, care and practice. Jessica Kingsley Publishers, London

International Committee of Medical Journal Editors (ICMJE) (2010), Uniform Requirements for Manuscripts Submitted to Biomedical Journals: Writing and Editing for Biomedical Publication.Accessed online on 9 November 2011 at:

International Ethical Guidelines for Biomedical Research involving Human Subjects (2002): prepared by the Council for International Organizations of Medical Sciences (CIOMAS) in collaboration with the World Health Organization

Jacobson, N. (2007), Dignity and health: a review.Social Science and Medicine, 64, 292-302

Jansen, L.A. and Wall, S. (2009), Paternalism and fairness in clinical research.Bioethics, 23, 3, 172-182

Jeste, D.V., Palmer, B.W., Appelbaum, P.S., Golshan, S., Glorioso, D., Dunn. L.B., Kim, K., Meeks, T. and Kraemer, H.C. (2007), A new brief instrument for assessing decisional capacity for clinical research.Arch Gen Psychiatry, 64, 8, 966-974

Jourard, S. M. (1964).The transparent self.Princeton, NJ: D van Nostrand

Joly, Y., Knoppers, B.M. and Godard, B. (2003), Genetic information and life insurance: a “real” risk?European Journal of Human Genetics, 11, 561-564

Kalisvaart, K.J., Vreeswijk, R., de Jonghe, J.F.M. et al. (2006), Risk factors and prediction of post-operative delirium in elderly hip-surgery patients: implementation and validation of a medical risk factor model.Journal of American Geriatric Society, 54, 817-822

Karlawish, J., Rubright, J., Casarett, D., Ten Have, T. and Sankar, P. (2009), Older adults’ attitudes toward enrollment of non-competent subjects participating in Alzheimer’s research.American Journal of Psychiatry, 166, 2, 182-188

Keady, J., Nolan, M. and Gilliard, J. (1995), Listen to the voices of experience.Journal of Dementia Care, 3, 3, 15-17

Kemshall, H. (2000), Conflicting knowledges on risk: the case of risk knowledge in the probation service,Health, Risk and Society, 2, 2, 143-158

Kim, S.Y.H. (2011), The ethics of informed consent in Alzheimer disease research.Nat Rev Neurology, 7, 410-414

Kim, S.Y.H., Caine, E.D., Currier, G.W., Leibovici, A. and Ryan, J.M.  (2001), Assessing the competence of persons with Alzheimer’s disease in providing informed consent for participation in research.American Journal of Psychiatry, 158, 712-717

Kimmel, A.J. (1998), In defense of deception.American Psychologist, 53, 7, 803-805

Kitwood, T. (1988), The contribution of psychology to the understanding of senile dementia. In Eds. Baldwin, C. and Capstick, A. (2007),Tom Kitwood on dementia: a reader and critical commentary, Open University Press, 108-118

Kitwood, T. (1990), The dialectics of dementia: with particular reference to Alzheimer’s disease.Ageing and Society, 10, 2, 177-196.

Kitwood, T and Bredin, K. (1992), Towards a theory of dementia care: personhood and well-being.Ageing and Society, 12, 3, 269-287

Kitwood, T. (1993). Towards the reconstruction of an organic mental disorder. In A. Radley,Worlds of Illness.London: Routledge.

Kitwood, T. (1995), Exploring the ethics of dementia research: a response to Berghmans and Ter Meulen: a psychosocial perspective.International Journal of Geriatric Psychiatry, 10, 655-657

Kitwood, T. (1997),Dementia reconsidered – the person comes first, Open University Press

Krouse, R.S., Easson, A.M. and Angelos, P. (2003), Ethical considerations and barriers to research in surgical palliative care.J Am Coll Surg, 196, 3, 469-474

Krueger, R.A., & Casey, M.A. (2009).Focus groups: a practical guide for applied research, 4th edition.Sage Publications.

Lappe, M. (1986), Ethics and public health. In Ed. Last JM, Norwalk, CT, Appleton Maxcy-Rosenau’s public health and preventive medicine12th edition. Century –Crofts, 1867-1877

LaRue, A. and Markee, T. (1995), Clinical assessment research with older adults.Psychological Assessment, 7, 376-386

Leibowitz, R. (1999), Genetic testing without treatment: the value of knowledge for its own sake.Medical Ethics, September 1999, 1, 1, 4-5

Lerner, M.J. (1980).The belief in a just world: a fundamental delusion.New York: Plenum

Link, B.G. and Phelan, J.C. (2001). Conceptualizing stigma.Annual Review of Sociology, 27, 363-385

Link, B.G., and Phelan, J.C. (2006). Stigma and its public health implications.The Lancet, 367, 528-529

Loewy, E.H. (2007),Evidence and evidence-based medicine: is there a conflict?Accessed online on 23 September 2011 at:

Lovestone, S. and Gauthier, S. (2001),Management of dementia. Martin Dunitz Ltd

Lupton, D (1999),Risk, London, Routledge

Lynn, J. and Adamson, D.M. (2005), Living well at the end of life, adapting health care to serious chronic illness in old age. Washington: Illness Trajectories and palliative careBMJ(clinical research ed): 330:7898:1007-10011

Maj, M. (2008), Non-financial conflicts of interests in psychiatric research and practice.The British Journal of Psychiatry, 193, 91-92

Mason, S., Hussain-Gambles, M., Leese, B., Atkin, K., Brown, J. (2003), Representation of South Asian people in randomised clinical trials: analysis of trials’ data.British Medical Journal,326, 1244-5

Mason, S., Barrow, H., Phillips, A., Eddison, G., Nelson, A., Cullum, N and Nixon, J. (2006), Brief report on the experience of using proxy consent for incapacitated adults.Journal of Medical Ethics, 32, 61-62

Maxwell, JA (2005), Qualitative research design: an interactive approach, 2nd edition, Sage Publications

McGowin, D. F. (1993).Living in the labyrinth: a personal journey through the maze of Alzheimer's.San Francisco: Elder Books.

McKillop, J. (2010 and 2011), Papers and communications. Examples include 20th Alzheimer Europe Annual Conference (Luxembourg), Belgian EU presidency conference (Brussels, Belgium) and the International Psychogeriatrics Association conference (the Netherlands) amongst others.

McKillop, J. (2011),Personal communication in the context of the working group on the ethics of research. Alzheimer Europe

Her Majesty’s Stationery Office and Queen’s Printer of Acts of Parliament (2005), Mental Capacity Act 2005, The Stationery Office Limited, Downloadable at:

Miller, R. and Wilner, H.S (1974), The two-part consent form: a suggestion for promoting free and informed consent.New England Journal of Medicine, 290, 17, 964-966

Miller, F. and Wertheimer, A. (2007),Facing up to paternalism. Hastings Cen. Rep, May-June

Milton, C. (2000), Informed consent: process or outcome?Nursing Science Quarterly, 13, 291-298

Mody, L., Miller, D.K., McGloin, J.M. (2008), Recruitment and retention of older adults in aging research.Journal of the American Geriatric Society, 56, 2340-2348

Molloy, D.W. and Standish T.I.M. (1997), Mental status and neuropsychological assessment: a guide to the standardized Mini-Mental State Examination,International Psychogeriatrics, 9, 1, 87-94

Morris, J.C. (2005), Early stage and preclinical Alzheimer’s disease.Alzheimer’s Disease Association Disorders, 19, 163-165

Morse, J. (2000), Researching illness and injury: methodological considerations.Qual Health Res, 10, 4, 538-546

Moye, J. and Marson, D.C. (2007), Assessment of decision-making capacity in older adults: an emerging area of practice and research.Journal of Gerontology, 62B, P3-P11

Muncie, H.I., Magaziner, J., Hebel, J.R. et al. (1997), Proxies’ decisions about research participation for their charges.J Am Geriatr Soc, 45, 929-933

National Bioethics Advisory Commission (2001),Ethical and policy issues in research involving human participants. Bethseda, MD: National  Bioethics Advisory Commission

National Bioethics Commission of Greece (2005),Recommendations on clinical trials. Accessed online on 19 April 2011 at:

National Center for Biotechnology Information, US National Library of Medicine,

National Creutzfeldt-Jakob Disease Surveillance Unit (2008), Scientific report 2007/2008. Accessed online on 7 December 2011 at:

National Research Ethics Service (2011), Patients and the public. National Health Service, National Patient Safety Agency, accessed online on 25 October 2011 at:

New Zealand Government (2006), New Zealand Sign Language Act 2006 No 18 (as at 30 June 2008), Public Act. Accessed online on 8 December 2011 at:

NHS Choices (National Health Service) (2009), Clinical trials and medical research, Accessed online on 4 August 2009 at:

NHS (National Health Service) (2009),Issues, guidance & evidence – deception in medical research, IGE paper, V1 1 July 2009, 1-6

NIGMS (National Institute of General Medical Sciences (2011), Frequently asked questions about pharmacogenomics. Accessed online on 17 October 2011 at:

Noble-Adams, R. (1999), Ethics and nursing research. 1. Development, theories and principles.British Journal of Nursing, 8, 888-892

Nordenfelt, L (2002), The varieties of dignity.Health Care Analysis, 12, 69-81

Novak, D. W., & Lerner, M. J. (1968). Rejection as a consequence of perceived similarity.Journal of Personality and Social Psychology, 9, 2, 147-152.

Nuffield Council on Bioethics (2011),Human bodies: donation for medicine and research. Accessed online on 9 November 2011 at:

Olde Rikkert, M.G.M., van den Bercken, H.L., ten Have, H.A.M..J and Hoefnagels, W.H.L. (1997), Experienced consent in geriatrics research: a new method to optimize the capacity to consent in frail elderly subjects.Journal of Medical Ethics, 23, 271-276

Ortmann, A. and Hertwig, R. (1997), Is deception acceptable?American Psychologist, 52, 7, 746-747

Orwig, D., Rickles, N.M., Gore Martin, L. (2011), Methodological issues in pharmacotherapy research in older adults: Commentary.The American Journal of Geriatric Pharmacotherapy, 9, 3, 173-189

Parfit, D. (1984),Reasons and Persons.Oxford: Clarendon Press.

Parrot, E.S. (2002), Ethnographic research. In R.J. Amdur and E.A. Bankert (Eds),Institutional review board: management and function(407-414). Sudbury, MA: Jones and Bartlett

Patton, M.Q. (1990), Qualitative evaluation and research methods (2nd edition), Sage Publications Inc.

Peach, L. (1995), An introduction to ethical theory. In Penslar, R.L. (Ed.),Research ethics: cases and material, Indianapolis, Indiana University Press, 13-26

Petersen, R.C., Smith, G.E., Waring, S.C et al. (1999), Mild cognitive impairment: clinical characterization and outcome.Arch Neurol, 56, 303-308

Petrini, C. (2010), Informed consent in experimentation involving mentally impaired persons: ethical issues.Ann Ist Super Sanita, 46, 4, 411-421

Petrini, C. (2010), Theoretical models and operational frameworks in public health ethics.Int J Environ Res Public Health, 7, 1, 189-202

Petrini, C. (2011), Informed consent from cognitively impaired persons participating in research trials: comparative law observations.Ann Istituto Super Sanita47, 4, 353-362

Phinney, A. (2008), Towards understanding subjective experiences of dementia. In (Eds) Downs, M. and Bowers, B., (2008),Excellence in Dementia Care: research into practice. Open University Press, 35-51

Pierce, R. (2010), A changing landscape for advance directives in dementia research.Social Science and Medicine, 70, 623-630

Pierce, R. (2010), Complex calculations: ethical issues in involving at-risk healthy individuals in dementia research.Journal of Medical Ethics, 36, 553-557

Pimplikar, S.W., Nixon, R.A., Robakis, N.K., Shen, J and Tsai, L.-H. (2010), Amyloid-independent mechanisms in Alzheimer’s disease pathogenesis.The Journal of Neuroscience, 30, 45, 14946-14954

Pojman, L.P. (2002), Ethical theory. Classics and contemporary readings, 4th edition, Toronto, Wadsworth Thomson Learning

Pratt, R. (2002), Nobody’s ever asked how I felt. In: (Ed.) Wilkinson, H.The perspectives of people with dementia, Jessica Kingsley Publishers, London, 165-182

Pratt, R. and Wilkinson, H. (2001),“Tell me the truth”: the effect of being told the diagnosis of dementia from the perspective of the person with dementia.The Mental Health Foundation, London

Presidential Commission for the Study of Bioethical Issues (2011),Moral Science: Protecting Participants in Human Subjects Research,Accessed online on 30 December 2011 at:

Raudonis, B.M. (1992), Ethical considerations in qualitative research with hospice patients.Qualitative Health Research, 2, 2, 238-249

Reynolds, T. (2011), Clinical trials: can technology solve the problem of low recruitment?British Medical Journal, 342, 1338-1339

Rendtorff, J. and Kemp, P. (2000), Basic ethical principles in European bioethics and biolaw. InAutonomy, Dignity, Integrity and Vulnerability, Volume I, Denmark: Centre for Ethics and Law (2000)

Resnik, D.B. (1998),The ethics of science: an introduction. New York, Routledge

Ritchie, J. and Lewis, J. (Eds.) (2003),Qualitative Research Practice: A Guide for Social Science Students and Researchers,Sage Publications, London.

Röhrig, B., du Prel, J-B. and Blettner, M. (2009), Types of study in medical research.Deutsches Ärzteblatt International, 106, 4, 262-268

Royal College of Psychiatrists (2001),Guidelines for researchers and for research ethics committees on psychiatric research involving human participants. Council report CR82, Gaskell

Sarazin, M., Berr, C., De Rotrou, J. et al. (2007), Amnestic syndrome of the medial temporal type identifies prodromal AD: a longitudinal study.Neurology, 69, 1859-1867

Schulte, P.A. (1992), Biomarkers in epidemiology: scientific issues and ethical implications: Commentary.Environmental Health Perspectives, 98, 143-147

Schulz, J.H. (1988), The economics of aging, 4th ed. Auburn House Publishing

Seigel, D. (2003), Clinical trials, epidemiology, and public confidence.Statistics in Medicine, 22, 3419-3425

Servais, L. M., & Saunders, S. M. (2007). Clinical psychologists' perceptions of persons with mental illness.Professional Psychology: research and practice, 38, 214-219.

Sessums, L.L., Zembrzuska, H. and Jackson, J.L. (2011), Does this patients have medical decision-making capacity?Journal of the American Medical Association, 306, 4, 420-427

Shah J. (2001), Genetic exceptionalism in anti-discrimination legislation.In Touch, 4, 4, 2001. Accessed online on 27 October 2011 at:

Shalowitz, D.I., Garrett-Mayer, E. and Wendler, D. (2006), The accuracy of surrogate decision makers.Archives of Internal Medicine, 166, 5, 493-497

Sheehan, B., Burton, E. and Mitchell, L. (2006), Outdoor wayfinding in dementia.Dementia, 5, 271-281

Sherratt, C., Soteriou, T. and Evans, S. (2007), Ethical issues in social research involving people with dementia.Dementia, 6, 463-479

Sifford, KS and Bharucha, A (2010), Benefits and challenges of electronic surveillance in nursing home research.Research in Gerontological Nursing, 3, 1, 5-10

Small, B.J., Fratiglioni, L., Viitanen, M, Winblad, B. and Bäckman, L (2000), The course of cognitive impairment in preclinical Alzheimer Disease.Arch Neurol, 57, 839-844

Smith, G.E., Petersen, R.C., Parisi, J.E. et al. (1996), Definition, course and outcome of mile cognitive impairment.Ageing Neuropsychol Cognition, 3, 141-147

Snape, D. and Spencer, L. (2003), The foundations of qualitative research. In Ritchie, J. and Lewis, J. (Eds.) (2003),Qualitative Research Practice: A Guide for Social Science Students and Researchers,Sage Publications, London.

Snider, D.E. and Stroup, D.F. (1997), Defining research when it comes to public health.Public Health Rep, 112-129

Snowdon, D.A. (2003), Health aging and dementia: Findings from the nun study.Ann Intern Med, 139, 450-454

Sodeke, S.O. (2005), Probing ethics in human research. Applied Clinical Trials Online. Accesse online on 10 August 2011 at:

Solomon, S., Greenberg, J., & Pyszczynski, T. (1991). A terror management theory of social behaviour. The psychological functions of self-esteem and cultural world views. In M. P. Zanna.Advances in experimental social psychology, 24.San Diego CA: Academic Press.

Sox, H.C. and Greenfield (2009), Comparative effectiveness research: a report from the Institute of medicine.Ann Intern Med, 151, 203-206

Snape and Spencer (2003), The foundations of qualitative research. In Ritchie, J. and Lewis, J. (Eds.) (2003),Qualitative Research Practice: A Guide for Social Science Students and Researchers,Sage Publications, London

Sperling, R.A., Aisen, P.S., Becket, L.A., Bennett, D.A. et al. (2011), Toward defining the preclinical stages of Alzheimer’s disease: Recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease.Alzheimer’s and Dementia, 7, 280-292

Stanfield, J.H.I.I. (1991), Racism in American and other race-centered societies.International Journal of Comparative Sociology, 32, 243-260

Stocking, C.B., Hougham, G.W., Danner, D.D., Patterson, M.B. Whitehouse, P.J. and Sachs, G.A. (2006), Speaking of research advance directives: planning for future research participation. Neurology, 66, 9, 1361-1366

Stocking, C.B., Hougham, G.W., Danner, D.D., Patterson, M.B. Whitehouse, P.J. and Sachs, G.A. (2007), Empirical assessment of a research advance directive for persons with dementia and their proxies.JAGS, 55, 1609-1612

Stocking, C.B., Hougham, G.W., Danner, D.D., Patterson, M.B., Whitehouse, P.J. and Sachs, G.A. (2007), Variable judgments of decisional capacity in cognitively impaired research subjects.JAGS, 56, 1893-1897

Sugarman, J. Cain, C., Wallace, R. and Welsh-Bohmer, K.A. (2001), How proxies make decisions about research for patients with Alzheimer’s disease.JAGS, 49, 8, 1110-1119

Sulmasy, D.P. and Snyder, L. 82010), Substituted interests and best judgments: an integrated model of surrogate decision making.JAMA, 304, 1946-1947

Suter, S.M. (2001),The allure and peril of genetic exceptionalism: do we need special genetics legislation?GWU Law School, Public law Research Paper No. 19. Abstract accessed online on 27 October 2011 at:

Tafarodi, R.W., Bonn, G., Liang, H., Takai, J., Morizumi, S. Belhekar, V. and Padhye, A. (2011), What makes for a good life? A four-nation study. Journal of Happiness Studies, published online, please see:

Tashakkori, A., & Teddlie, C. (1998).Mixed methodology: Combining qualitative and quantitative approaches.Sage Publications.

Taylor, G.T. and Wainwright, P. (2005), Open label extension studies: research or marketing.British Medical Journal, 331, 572-574

Tinetti, M.E. and Studenski, S.A. (2011), Comparative effectiveness research and patients with multiple chronic conditions.The New England Journal of Medicine, 364, 26, 2478-2481

Tyack, D. (1995), “Schooling and social diversity: historical relations. In W.D. Hawley and A.W. Jackson (eds.),Toward a common destiny: improving race and ethnic relations in America,Jossey-Bass Publishers, 3-38

UNESCO (2003), International Declaration on Human Genetic Data. Accessed online on 27 October 2011 at:

United Nations (1982), World charter for nature. Accessed online on 27 October 2011 at:

US Department of Health and Human Services (2011), Code of federal regulations; title 45 public welfare, part 46 protection of human subjects. Accessed online on 29 November 2011 at:

Van Spall, H.H., Toren, A. and Kiss, A. (2007), Eligibility criteria of randomized controlled trials published in high-impact general medical journals: a systematic sampling review.JAMA, 297, 1233-1240

Vass. A.A., Minardi, H.A., Ward, R., Aggarwal, N., Garfield, C. and Cybyk, C. (2003), Research into communication patterns and consequences for effective care of people with Alzheimer’s and their carers.Dementia, 2, 1, 21-48

Vaughn, P. (2011),Studies find possible new genetic risk factors for Alzheimer’s disease, NIH News. Accessed online on 20 April 2011 at:

Vernooij-Dassen, M., Leatherman, S. and Olde Rikkert, M. (2011), Quality of life in frail older people: the fragile balance between receiving and giving.British Medical Journal, 342:d403

Vollman, J. (2001), Advance directives in patients with Alzheimer’s disease. Ethical and clinical considerations.Medicine, Healthcare and Philosophy, 4, 161-167

Weiner, B., Perry, R. P., & Magnussen, J. (1988). An attributional analysis of reactions to stigmas.Journal of Personality and Social Psychology, 55, 5,738-748.

Weiner, M. W. (2010), About ADNI. Internet page accessed online on 26 October 2011 at:

Welie, S.P.K. and Berghmans, R. (2006), Inclusion of patients with severe mental illness in clinical trials.CNS Drugs, 20, 1, 67-83

Wendler, D., Martinez, R.A., Fairclough, D., Sunderland, T. and Emanuel, E. (2002), Views of potential subjects toward proposed regulations for clnical research with adults unable to consent.Am J Psychiatry, 159, 585-591

Werezak, L. J., & Morgan, D. G. (2003). Creating a therapeutic psychosocial environment in dementia care: a preliminary framework.Journal of Gerontological Nursing, 18-25.

Werner, P. (2001). Correlates of family caregivers' knowledge about Alzheimer's disease.International Journal of Geriatric Psychiatry, 16, S. 32-38.

White, M.T. (2000), Ethical issues in genetic research. Internet article Accessed online on 17 November 2011 at:

White, S. (2008),But what is wellbeing? A framework for analysis in social and development policy and practice. Paper for regeneration and wellbeing: research into practice, University of Bradford, 24-25 April 2008

Wikipedia (2011),Epidemiology. Accessed online on 1 November 2011 at:

Wilkinson, H. (Ed.) (2002),The perspectives of people with dementia: research methods and motivations.Jessica Kingsley Publishers, London

World Health Organisation (2011), Mental health: a state of well-being. Accessed online on 3 November 2011 at:

World Medical Association (1964), World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects (with amendments up to 2008). Accessed online on 18 November 2011 at:

World Medical Association (2001), WMA clarifies its guidance on the use of placebo-controlled trials. Accessed online on 18 November 2011 at:

Zaki, S.A. (2011), Gift authorship – a cause for concern.Lung India, 28, 3, 232-233

Zulman, D.M., Sussman, J.B., Chen, X., Cigolle, C.T., Blaum, C.S., Hayward, R.A. (2011), Examining the evidence: a systematic review of the inclusion and analysis of older adults in randomized controlled trials.J Gen Intern Med, 26, 7, 783-90



Last Updated: Thursday 29 March 2012


  • Acknowledgements

    The above information was published in the 2011 Report "The ethics of dementia research" as part of Alzheimer Europe's 2011 Work Plan which received funding from the European Union in the framework of the Health Programme.
  • European Union