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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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Alternatives for protecting privacy while respecting patient care and public health needs.

https://arctichealth.org/en/permalink/ahliterature80584
Source
Ethics Inf Technol. 1999;1(4):249-55
Publication Type
Article
Date
1999
Author
DeCew J W
Author Affiliation
Clark University, Worcester, MA, USA.
Source
Ethics Inf Technol. 1999;1(4):249-55
Date
1999
Language
English
Publication Type
Article
Keywords
Access to Information
Databases, Factual
European Union
Federal Government
Germany
Government Regulation
Guidelines
Humans
Informed consent
Internet
Medical Records
Medical Records Systems, Computerized - legislation & jurisprudence - standards
Models, organizational
Negotiating
Privacy - legislation & jurisprudence
Private Sector
Public Policy
Security Measures
Social Control, Informal
Sweden
United States
Abstract
This paper begins with a discussion of the value of privacy, especially for medical records in an age of advancing technology. I then examine three alternative approaches to protection of medical records: reliance on governmental guidelines, the use of corporate self-regulation, and my own third hybrid view on how to maintain a presumption in favor of privacy with respect to medical information, safeguarding privacy as vigorously and comprehensively as possible, without sacrificing the benefits of new information technology in medicine. None of the three models I examine are unproblematic, yet it is crucial to weigh the strengths and weaknesses of these alternative approaches.
PubMed ID
16986224 View in PubMed
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Assisted reproduction without assisting over-collection: fair information practices and the assisted human reproduction agency of Canada.

https://arctichealth.org/en/permalink/ahliterature153396
Source
Health Law J. 2009;17:229-67
Publication Type
Article
Date
2009

Canadian Health Measures Survey: ethical, legal and social issues.

https://arctichealth.org/en/permalink/ahliterature159232
Source
Health Rep. 2007;18 Suppl:37-51
Publication Type
Article
Date
2007
Author
Brent Day
Renée Langlois
Mark Tremblay
Bartha-Maria Knoppers
Author Affiliation
Physical Health Measures Division, Statistics Canada, Ottawa, Ontario. Brent.Day@statcan.ca
Source
Health Rep. 2007;18 Suppl:37-51
Date
2007
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Aged
Canada - epidemiology
Child
Disclosure - ethics
Ethics, Research
Female
Health Status Indicators
Health Surveys
Humans
Informed Consent - ethics
Male
Middle Aged
Privacy - legislation & jurisprudence
Abstract
This article describes how the Canadian Health Measures Survey (CHMS) of Statistics Canada has addressed the ethical, legal and social issues (ELSI) arising from the survey. The development of appropriate procedures and the rationale behind them are discussed in detail for some specific ELSI. Health Canada's Research Ethics Board, the Office of the Privacy Commissioner of Canada, and the Data Access and Control Services Division at Statistics Canada, provided advice to the CHMS on ELSI. Statistics Canada's legal obligation to protect confidentiality, the oath of office, and security measures at Statistics Canada are explained. Additional information on safeguards specific to the CHMS is presented. The ELSI discussed include communication and consent, privacy and confidentiality, reporting results to survey respondents, inclusiveness, and storage of biospecimens. Common to all ELSI is the need for respondents' awareness and acceptance of their role in the survey process, and the obligation of the CHMS to respect respondents and the data they provide.
PubMed ID
18210869 View in PubMed
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Case of disclosure of HIV status helps to clarify privacy law in Ontario.

https://arctichealth.org/en/permalink/ahliterature155493
Source
HIV AIDS Policy Law Rev. 2008 Jul;13(1):48
Publication Type
Article
Date
Jul-2008
Author
Renée Lang
Source
HIV AIDS Policy Law Rev. 2008 Jul;13(1):48
Date
Jul-2008
Language
English
French
Publication Type
Article
Keywords
Disclosure
HIV Seropositivity
Humans
Ontario
Privacy - legislation & jurisprudence
Abstract
A judge in the Ontario Superior Court of Justice has dismissed a breach of privacy suit on the basis that the plaintiff failed to prove that the disclosure of his HIV status had caused him harm. The judgment set out guidelines for how future claims of breach of privacy should be addressed.
PubMed ID
18727197 View in PubMed
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Citizens' values regarding research with stored samples from newborn screening in Canada.

https://arctichealth.org/en/permalink/ahliterature127932
Source
Pediatrics. 2012 Feb;129(2):239-47
Publication Type
Article
Date
Feb-2012
Author
Yvonne Bombard
Fiona A Miller
Robin Z Hayeems
June C Carroll
Denise Avard
Brenda J Wilson
Julian Little
Jessica P Bytautas
Judith Allanson
Renata Axler
Yves Giguere
Pranesh Chakraborty
Author Affiliation
Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada.
Source
Pediatrics. 2012 Feb;129(2):239-47
Date
Feb-2012
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Biomedical research
Blood Specimen Collection
Canada
Cross-Cultural Comparison
Focus Groups
Health education
Humans
Infant, Newborn
Middle Aged
Neonatal Screening - legislation & jurisprudence
Pamphlets
Parental Consent - legislation & jurisprudence
Privacy - legislation & jurisprudence
Public Opinion
Quality Control
Social Values
Abstract
Newborn screening (NBS) programs may store bloodspot samples and use them for secondary purposes. Recent public controversies and lawsuits over storage and secondary uses underscore the need to engage the public on these issues. We explored Canadian values regarding storage and use of NBS samples for various purposes and the forms of parental choice for anonymous research with NBS samples.
We conducted a mixed-methods, public engagement study comprising 8 focus groups (n = 60), an educational component, deliberative discussion, and pre- and post-questionnaires assessing knowledge and values toward storage and parental choice.
Canadian citizens supported the storage of NBS samples for quality control, confirmatory diagnosis, and future anonymous research (>90%). There was broad support for use of NBS samples for anonymous research; however, opinions were split about the extent of parental decision-making. Support for a "routinized" approach rested on trust in authorities, lack of concern for harms, and an assertion that the population's interest took priority over the interests of individuals. Discomfort stemmed from distrust in authorities, concern for harms, and prioritizing individual interests, which supported more substantive parental choice. Consensus emerged regarding the need for greater transparency about the storage and secondary use of samples.
Our study provides novel insights into the values that underpin citizens' acceptance and discomfort with routine storage of NBS samples for research, and supports the need to develop well-designed methods of public education and civic discourse on the risks and benefits of the retention and secondary use of NBS samples.
Notes
Comment In: Pediatrics. 2012 Feb;129(2):365-622250020
PubMed ID
22250019 View in PubMed
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The client's right to know versus the nurse's right to be protected from harm.

https://arctichealth.org/en/permalink/ahliterature206920
Source
Nurs BC. 1997 Nov-Dec;29(5):11-2
Publication Type
Article
Author
J. Ellis
Source
Nurs BC. 1997 Nov-Dec;29(5):11-2
Language
English
Publication Type
Article
Keywords
British Columbia
Humans
Legislation, Nursing
Occupational health - legislation & jurisprudence
Patient Advocacy - legislation & jurisprudence
Privacy - legislation & jurisprudence
Safety
Violence - prevention & control
Abstract
The other day, several nurses on our medical-surgical unit got into a heated debate about staff identification. One nurse was upset that her uncle who had been a patient in another hospital had not been able to find out the names of the nurses who cared for him. Her uncle wanted to write the hospital about concerns he had on the nursing care he received and was very frustrated because the hospital wouldn't tell him the names of the nurses. Some of us said the hospital was right, employers have to protect nurses from harm and should not release the names.
PubMed ID
9423432 View in PubMed
Less detail

Coding and consent: moral challenges of the database project in Iceland.

https://arctichealth.org/en/permalink/ahliterature179922
Source
Bioethics. 2004;18(1):27-49
Publication Type
Article
Date
2004
Author
Vilhjalmur Arnason
Author Affiliation
Department of Philosophy, Center for Ethics, Main Building, University of Iceland, IS-101 Reykjavik, Iceland. vilhjarn@hi.is
Source
Bioethics. 2004;18(1):27-49
Date
2004
Language
English
Publication Type
Article
Keywords
Databases, Factual
Databases, Nucleic Acid
Genetic Privacy - legislation & jurisprudence
Genetic Research - ethics - legislation & jurisprudence
Humans
Iceland
Industry
Informed Consent - legislation & jurisprudence
Medical Records
Pedigree
Presumed Consent - ethics
Third-Party Consent
Abstract
A major moral problem in relation to the deCODE genetics database project in Iceland is that the heavy emphasis placed on technical security of healthcare information has precluded discussion about the issue of consent for participation in the database. On the other hand, critics who have emphasised the issue of consent have most often demanded that informed consent for participation in research be obtained. While I think that individual consent is of major significance, I argue that this demand for informed consent is neither suitable nor desirable in this case. I distinguish between three aspects of the database and show that different types of consent are appropriate for each. In particular, I describe the idea of a written authorisation based on general information about the database as an alternative to informed consent and presumed consent in database research.
PubMed ID
15168697 View in PubMed
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42 records – page 1 of 5.