+ Site Statistics
+ Search Articles
+ PDF Full Text Service
How our service works
Request PDF Full Text
+ Follow Us
Follow on Facebook
Follow on Twitter
Follow on LinkedIn
+ Subscribe to Site Feeds
Most Shared
PDF Full Text
+ Translate
+ Recently Requested

Knowledge of the legislation governing proxy consent to treatment and research



Knowledge of the legislation governing proxy consent to treatment and research



Journal of Medical Ethics 29(1): 44-50



To assess the knowledge of four groups of individuals regarding who is legally authorised to consent to health care or research involving older patients. A provincewide postal survey. Province of Quebec, Canada. Three hundred older adults, 434 informal caregivers of cognitively impaired individuals, 98 researchers in aging and 136 members of research ethics boards (REBs). Knowledge was assessed through a pretested postal questionnaire comprising five vignettes that describe hypothetical situations involving an older adult who requires medical care or is solicited for research. The respondent had to identify the person who is legally authorised to provide consent. Nearly 80% of all respondents provided the correct answer when the hypothetical scenario depicted a person who was competent to consent or incompetent but legally represented. Knowledge was worse (from 2% among older adults to 44% among REB members) for the scenario describing a research situation that involved an incompetent adult without a legal guardian. The observed lack of knowledge raises doubts about the ability of current legislation to truly protect the rights of older adults with diminished decision making capacity. It points to the need for educational programmes aimed at increasing public awareness of the legislation put in place for those requiring special protection.

Please choose payment method:






(PDF emailed within 0-6 h: $19.90)

Accession: 046508517

Download citation: RISBibTeXText

PMID: 12569196

DOI: 10.1136/jme.29.1.44


Related references

Knowledge of the Legislation Governing Proxy Consent to Treatment and Research. Journal of Medical Ethics 29(1): 44-50, 2003

Comparison of provincial and territorial legislation governing substitute consent for research. Canadian Journal on Aging 24(3): 237-250, 2005

Canadian legislation governing consent to health treatment. Canadian Nurse 90(11): 24, 1994

The Adult Health Care Consent Act: new legislation governing treatment of incompetent patients in South Carolina. Journal of the South Carolina Medical Association 87(1): 12-19, 1991

Disruptive Influences on Research in Academic Pathology Departments: Proposed Changes to the Common Rule Governing Informed Consent for Research Use of Biospecimens and to Rules Governing Return of Research Results. American Journal of Pathology 187(1): 4-8, 2017

Ethical aspects of dementia research: informed consent and proxy consent. Clinical Research 42(3): 403-412, 1994

Enrolling subjects by exception from consent versus proxy consent in trauma care research. Annals of Emergency Medicine 51(4): 355-60 360.E1-3, 2008

Comfort with proxy consent to research involving decisionally impaired older adults: do type of proxy and risk-benefit profile matter?. International Psychogeriatrics 23(9): 1479-1488, 2011

A jurisdictional review of the legislation governing informed consent by chiropractors across Canada. Journal of the Canadian Chiropractic Association 60(1): 73-80, 2016

General provisional proxy consent to research: redefining the role of the local research ethics board. Irb 21(3): 1-10, 2001

General Provisional Proxy Consent to Research: Redefining the Role of the Local Research Ethics Board. Irb Ethics and Human Research 21(3): 1-10, 1999

Consumer knowledge and expectations of restaurant menus and their governing legislation: a qualitative assessment. Journal of Foodservice 17(1): 6-22, 2006

Proxy consent to research: the legal landscape. Yale Journal of Health Policy Law and Ethics 8(1): 37-92, 2008

Changes in legislation governing biomedical research. Revue des Maladies Respiratoires 23(2 Pt 1): 105-108, 2006

Full-spectrum proxy consent for research participation when persons with Alzheimer disease lose decisional capacities: research ethics and the common good. Alzheimer Disease and Associated Disorders 17(Suppl. 1): S3, 2003