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Access to health care information: legal imperative or moral responsibility?

https://arctichealth.org/en/permalink/ahliterature104003
Source
Health Law Can. 1990;10(3):213-4
Publication Type
Article
Date
1990

Access to medical records for research purposes: varying perceptions across research ethics boards.

https://arctichealth.org/en/permalink/ahliterature158011
Source
J Med Ethics. 2008 Apr;34(4):308-14
Publication Type
Article
Date
Apr-2008
Author
D J Willison
C. Emerson
K V Szala-Meneok
E. Gibson
L. Schwartz
K M Weisbaum
F. Fournier
K. Brazil
M D Coughlin
Author Affiliation
Centre for Evaluation of Medicines, St Joseph's Healthcare, McMaster University, 105 Main Street East, P1, Hamilton, ON L8N 1G8, Canada. willison@mcmaster.ca
Source
J Med Ethics. 2008 Apr;34(4):308-14
Date
Apr-2008
Language
English
Publication Type
Article
Keywords
Biomedical Research - ethics - standards
Canada
Confidentiality - legislation & jurisprudence - psychology - standards
Ethics Committees, Research - ethics - standards
Humans
Medical Records - legislation & jurisprudence
Privacy - legislation & jurisprudence - psychology
Research Subjects - legislation & jurisprudence - psychology
Abstract
Variation across research ethics boards (REBs) in conditions placed on access to medical records for research purposes raises concerns around negative impacts on research quality and on human subject protection, including privacy.
To study variation in REB consent requirements for retrospective chart review and who may have access to the medical record for data abstraction.
Thirty 90-min face-to-face interviews were conducted with REB chairs and administrators affiliated with faculties of medicine in Canadian universities, using structured questions around a case study with open-ended responses. Interviews were recorded, transcribed and coded manually.
Fourteen sites (47%) required individual patient consent for the study to proceed as proposed. Three (10%) indicated that their response would depend on how potentially identifying variables would be managed. Eleven sites (38%) did not require consent. Two (7%) suggested a notification and opt-out process. Most stated that consent would be required if identifiable information was being abstracted from the record. Among those not requiring consent, there was substantial variation in recognising that the abstracted information could potentially indirectly re-identify individuals. Concern over access to medical records by an outside individual was also associated with requirement for consent. Eighteen sites (60%) required full committee review. Sixteen (53%) allowed an external research assistant to abstract information from the health record.
Large variation was found across sites in the requirement for consent for research involving access to medical records. REBs need training in best practices for protecting privacy and confidentiality in health research. A forum for REB chairs to confidentially share concerns and decisions about specific studies could also reduce variation in decisions.
PubMed ID
18375687 View in PubMed
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Adolescent minors, informed consent and health information privacy: balancing paternalism, health and autonomy in the reproductive health care context.

https://arctichealth.org/en/permalink/ahliterature160481
Source
Health Law Can. 2007 Aug;28(1):16-24
Publication Type
Article
Date
Aug-2007

[ADP in nursing. Passport to patients' data].

https://arctichealth.org/en/permalink/ahliterature225856
Source
Sygeplejersken. 1991 Aug 21;91(34):21-2
Publication Type
Article
Date
Aug-21-1991
Author
I. Iversen
Source
Sygeplejersken. 1991 Aug 21;91(34):21-2
Date
Aug-21-1991
Language
Danish
Publication Type
Article
Keywords
Computers
Confidentiality - legislation & jurisprudence
Ethics, Medical
Humans
Medical Records
Scandinavia
PubMed ID
1796359 View in PubMed
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Anonymity in connection with sperm donation.

https://arctichealth.org/en/permalink/ahliterature77668
Source
Med Law. 2007 Mar;26(1):137-43
Publication Type
Article
Date
Mar-2007
Author
Jørgensen H K
Hartling O J
Author Affiliation
The Danish Council of Ethics, Copenhagen, Denmark.
Source
Med Law. 2007 Mar;26(1):137-43
Date
Mar-2007
Language
English
Publication Type
Article
Keywords
Confidentiality - legislation & jurisprudence
Denmark
Humans
Male
Spermatozoa
Tissue Donors - legislation & jurisprudence
Abstract
Since Sweden abolished anonymity in connection with sperm donation in 1985, a number of other countries have followed suit. A legal provision still exists in Denmark to the effect that the donor must be anonymous. Arguments given in a Danish context against retaining the present scheme involving anonymous sperm donation will be discussed. The biggest problem with sperm donation seems to be non-disclosure. Current and important arguments in favour ofabolishing anonymity are that it sends out a clear signal that non-disclosure is unacceptable and that, in principle, all citizens should have access to the information available about themselves. However, the arguments can be criticised both from theoretical (legal) and several practical (medical) points of view. A substantive alternative to abolishing anonymity might be to inform parents about avoiding non-disclosure--and to design information material for the children, to support the parents.
PubMed ID
17511415 View in PubMed
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Attitudes to privacy, health records and interconnection: implications for healthcare organizations.

https://arctichealth.org/en/permalink/ahliterature188344
Source
Hosp Q. 2002;5(4):40-5, 2
Publication Type
Article
Date
2002
Author
Earl Berger
Author Affiliation
Hay Healthcare Consulting Group, Canada. Earl_Berger@haygroup.com
Source
Hosp Q. 2002;5(4):40-5, 2
Date
2002
Language
English
Publication Type
Article
Keywords
Access to Information - legislation & jurisprudence
Attitude to Health
Canada
Confidentiality - legislation & jurisprudence
Data Collection
Ethics
Humans
Medical Records Systems, Computerized
National Health Programs
Organizational Policy
Abstract
About nine in 10 Canadians support legislation that would protect patient confidentiality. However, the Canadian public is not consistent in its views regarding privacy. Data suggest that the public's attitudes to privacy, and particularly access to medical records, are heavily influenced by the context in which the situation is presented and potential benefits to the individual or to the public.
PubMed ID
12357571 View in PubMed
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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
Cites: Lancet. 1992 Oct 3;340(8823):807-101357243
Cites: Can J Surg. 2004 Dec;47(6):408-1315646438
Cites: Transplantation. 2005 Mar 27;79(6 Suppl):S53-6615785361
Cites: HIV Med. 2006 Apr;7(3):133-916494626
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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194 records – page 1 of 20.