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Attitudes to sharing personal health information in living kidney donation.

https://arctichealth.org/en/permalink/ahliterature144792
Source
Clin J Am Soc Nephrol. 2010 Apr;5(4):717-22
Publication Type
Article
Date
Apr-2010
Author
Patricia Hizo-Abes
Ann Young
Peter P Reese
Phil McFarlane
Linda Wright
Meaghan Cuerden
Amit X Garg
Author Affiliation
London Kidney Clinical Research Unit, Room ELL-101, Westminster, London Health Sciences Centre, 800 Commissioners Road East, London, Ontario N6A 4G5, Canada.
Source
Clin J Am Soc Nephrol. 2010 Apr;5(4):717-22
Date
Apr-2010
Language
English
Publication Type
Article
Keywords
Access to Information - legislation & jurisprudence
Adult
Aged
Attitude of Health Personnel
Confidentiality - legislation & jurisprudence - psychology
Cross-Sectional Studies
Female
Health Knowledge, Attitudes, Practice
Health Policy
Health Records, Personal
Humans
Informed Consent - legislation & jurisprudence - psychology
Kidney Transplantation - legislation & jurisprudence - psychology
Living Donors - legislation & jurisprudence - psychology
Male
Middle Aged
Ontario
Patient Education as Topic
Practice Guidelines as Topic
Questionnaires
Abstract
In living kidney donation, transplant professionals consider the rights of a living kidney donor and recipient to keep their personal health information confidential and the need to disclose this information to the other for informed consent. In incompatible kidney exchange, personal health information from multiple living donors and recipients may affect decision making and outcomes.
We conducted a survey to understand and compare the preferences of potential donors (n = 43), potential recipients (n = 73), and health professionals (n = 41) toward sharing personal health information (in total 157 individuals).
When considering traditional live-donor transplantation, donors and recipients generally agreed that a recipient's health information should be shared with the donor (86 and 80%, respectively) and that a donor's information should be shared with the recipient (97 and 89%, respectively). When considering incompatible kidney exchange, donors and recipients generally agreed that a recipient's information should be shared with all donors and recipients involved in the transplant (85 and 85%, respectively) and that a donor's information should also be shared with all involved (95 and 90%, respectively). These results were contrary to attitudes expressed by transplant professionals, who frequently disagreed about whether such information should be shared.
Future policies and practice could facilitate greater sharing of personal health information in living kidney donation. This requires a consideration of which information is relevant, how to put it in context, and a plan to obtain consent from all concerned.
Notes
Cites: Am J Transplant. 2003 Jul;3(7):830-412814474
Cites: Am J Transplant. 2009 Jul;9(7):1558-7319459792
Cites: Transplantation. 2004 Aug 27;78(4):491-215446304
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Cites: Can J Surg. 2004 Dec;47(6):408-1315646438
Cites: Transplantation. 2005 Mar 27;79(6 Suppl):S53-6615785361
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Cites: Ann Intern Med. 2006 Aug 1;145(3):185-9616880460
Cites: J Pers Assess. 2006 Dec;87(3):305-1617134338
Cites: Clin J Am Soc Nephrol. 2006 Nov;1(6):1148-5317699340
Cites: Am J Transplant. 2008 Sep;8(9):1878-9018671676
Cites: Nephrol Dial Transplant. 2008 Oct;23(10):3316-2418599559
Cites: N Engl J Med. 2009 Mar 12;360(11):1096-10119279341
Cites: J Med Ethics. 2009 Apr;35(4):270-119332587
Cites: Kidney Int. 2009 May;75(10):1088-9819225540
Cites: Am J Transplant. 2004 Oct;4(10):1553-415367208
PubMed ID
20299371 View in PubMed
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Consent in Alzheimer's disease research: risk/benefit factors.

https://arctichealth.org/en/permalink/ahliterature163864
Source
Can J Neurol Sci. 2007 Mar;34 Suppl 1:S27-31
Publication Type
Article
Date
Mar-2007
Author
B Lynn Beattie
Author Affiliation
Department of Medicine, Division of Geriatric Medicine, University of British Columbia, Vancouver, BC, Canada.
Source
Can J Neurol Sci. 2007 Mar;34 Suppl 1:S27-31
Date
Mar-2007
Language
English
Publication Type
Article
Keywords
Alzheimer Disease - physiopathology - psychology - therapy
Canada
Clinical Protocols - standards
Clinical Trials as Topic - ethics - standards
Humans
Immunotherapy - adverse effects
Informed Consent - legislation & jurisprudence - psychology - standards
Mental Competency - psychology - standards
Nootropic Agents - adverse effects
Patient Selection - ethics
Risk Assessment - ethics - standards
Withholding Treatment - ethics - standards
Abstract
In the era of chronic disease, we are challenged to find therapies that provide symptomatic relief and ideally, alter the course of the underlying disease. In Alzheimer's disease (AD), these issues are complicated by the disease itself, which affects the subject's decision-making capacity for participation in the research. According to established ethical guidelines it is clear that individuals with impaired capacity may participate in research and their risk should be no greater than that which the individual would have in day to day activities with anticipation of benefits within that realm. Decision making processes are complex and involve proxies who themselves have biases about their loved one and the potential for participating in the research. Newer disease-modifying approaches such as immunotherapy have potential for affecting the course of the underlying disease but with greater risk of more significant side effects. Ideally the health care of the subjects is not disadvantaged by research participation. At the same time, trials of potentially riskier therapy are relevant in subjects with the disease. Research for subjects with AD must have appropriate safeguards in place to enable effective progress in innovative therapy for a vulnerable, often elderly population. Recommendations are made which could further our capacity to undertake ethical research in the AD population.
PubMed ID
17469678 View in PubMed
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Medical research on patients with dementia--the role of advance directives in European legal instruments.

https://arctichealth.org/en/permalink/ahliterature165935
Source
Eur J Health Law. 2006 Sep;13(3):235-61
Publication Type
Article
Date
Sep-2006
Author
Salla Lötjönen
Author Affiliation
The University of Manchester, United Kingdom.
Source
Eur J Health Law. 2006 Sep;13(3):235-61
Date
Sep-2006
Language
English
Publication Type
Article
Keywords
Advance Directives - legislation & jurisprudence - psychology
Clinical Trials as Topic - legislation & jurisprudence - psychology
Dementia - psychology - therapy
Double Effect Principle
Epidemiologic Studies
Europe
Finland
Great Britain
Human Experimentation - legislation & jurisprudence
Humans
Informed Consent - legislation & jurisprudence - psychology
Mental Competency - legislation & jurisprudence - psychology
Patient Advocacy - legislation & jurisprudence - psychology
Patient Rights - legislation & jurisprudence
Patient Selection
Personal Autonomy
Philosophy, Medical
Research Subjects - legislation & jurisprudence - psychology
Abstract
Current international legal instruments recognise the use of advance directives to carry on the will of the dementing research participant beyond the boundaries of her present legal capacity. Advance directives are gaining greater recognition in patient care than in medical research, where their legal status is still somewhat unclear. In particular, the three major international documents on medical research - the Council of Europe Convention on Biomedicine and Human Rights (ETS 164), its Additional Protocol on Biomedical Research (ETS 195), and Directive 2001/20/EC on Clinical Trials on Medicinal Products--give conflicting messages on the legal status of advance directives in medical research. This article examines the provisions in these documents and their national applications in Finland and the United Kingdom.
PubMed ID
17190350 View in PubMed
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The Ontario experience of involuntary treatment of pediatric patients with eating disorders.

https://arctichealth.org/en/permalink/ahliterature144049
Source
Int J Law Psychiatry. 2010 May-Jun;33(3):138-43
Publication Type
Article
Author
Pier Bryden
Cathleen Steinegger
Daphne Jarvis
Author Affiliation
Department of Psychiatry, The Hospital for Sick Children, 555 University Avenue, Toronto, ON, M5G 1X8 Canada.
Source
Int J Law Psychiatry. 2010 May-Jun;33(3):138-43
Language
English
Publication Type
Article
Keywords
Adolescent
Anorexia Nervosa - psychology - therapy
Child
Commitment of Mentally Ill - legislation & jurisprudence
Eating Disorders - psychology - therapy
Enteral Nutrition
Female
Humans
Informed Consent - legislation & jurisprudence - psychology
Mental Competency - legislation & jurisprudence - psychology
Ontario
Abstract
In this paper, the authors (two clinicians with specialized practices in child and adolescent eating disorders and a lawyer who practices health law in Ontario, Canada) review pertinent aspects of clinical capacity assessment, with elaboration of the specific unique and complex issues which shape that assessment in children and adolescents with eating disorders. The relevant Ontario legislation and institutional framework governing consent and capacity in children and adolescents are reviewed. The literature on involuntary treatment and consent and capacity in patients with eating disorders is reviewed. Specific cases involving child and adolescent patients with eating disorders that have been heard by the Ontario Consent and Capacity Board (OCCB) in the past decade are discussed in order to elucidate the Board's views of consent and capacity in this vulnerable and challenging patient population. Strategies to support clinicians' therapeutic alliances with their patients while both are going through what can be a lengthy and potentially adversarial-seeming legal process are also discussed.
PubMed ID
20413158 View in PubMed
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6 records – page 1 of 1.