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CMAJ 2011 election survey: transparency.

https://arctichealth.org/en/permalink/ahliterature134779
Source
CMAJ. 2011 Jun 14;183(9):E513-4
Publication Type
Article
Date
Jun-14-2011

[Information in health care: Students' rights to access medical records should be regulated].

https://arctichealth.org/en/permalink/ahliterature104503
Source
Lakartidningen. 2014 Mar 19-Apr 1;111(12-13):529
Publication Type
Article

Shared Electronic Health Record Systems: Key Legal and Security Challenges.

https://arctichealth.org/en/permalink/ahliterature292507
Source
J Diabetes Sci Technol. 2017 Nov; 11(6):1234-1239
Publication Type
Journal Article
Date
Nov-2017
Author
Ellen K Christiansen
Eva Skipenes
Marie F Hausken
Svein Skeie
Truls Østbye
Marjolein M Iversen
Author Affiliation
1 Norwegian Centre for Integrated Care and Telemedicine, University Hospital of North Norway (UNN), Tromsø, Norway.
Source
J Diabetes Sci Technol. 2017 Nov; 11(6):1234-1239
Date
Nov-2017
Language
English
Publication Type
Journal Article
Keywords
Access to Information - legislation & jurisprudence
Computer Security - legislation & jurisprudence
Confidentiality - legislation & jurisprudence
Electronic Health Records - legislation & jurisprudence
Health Policy
Humans
Information Dissemination - legislation & jurisprudence
Norway
Patient care team
Policy Making
Telemedicine - legislation & jurisprudence
Ulcer - diagnosis - therapy
Abstract
Use of shared electronic health records opens a whole range of new possibilities for flexible and fruitful cooperation among health personnel in different health institutions, to the benefit of the patients. There are, however, unsolved legal and security challenges. The overall aim of this article is to highlight legal and security challenges that should be considered before using shared electronic cooperation platforms and health record systems to avoid legal and security "surprises" subsequent to the implementation. Practical lessons learned from the use of a web-based ulcer record system involving patients, community nurses, GPs, and hospital nurses and doctors in specialist health care are used to illustrate challenges we faced. Discussion of possible legal and security challenges is critical for successful implementation of shared electronic collaboration systems. Key challenges include (1) allocation of responsibility, (2) documentation routines, (3) and integrated or federated access control. We discuss and suggest how challenges of legal and security aspects can be handled. This discussion may be useful for both current and future users, as well as policy makers.
Notes
Cites: J Diabetes Sci Technol. 2011 May 01;5(3):768-77 PMID 21722592
Cites: Stud Health Technol Inform. 2011;169:417-21 PMID 21893784
Cites: JMIR Res Protoc. 2016 Jul 18;5(3):e148 PMID 27430301
PubMed ID
28560899 View in PubMed
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A nation's genes for a cure to cancer: evolving ethical, social and legal issues regarding population genetic databases.

https://arctichealth.org/en/permalink/ahliterature81982
Source
Columbia J Law Soc Probl. 2004;37(3):359-411
Publication Type
Article
Date
2004
Author
Hsieh Alice
Author Affiliation
Columbia Journal of Law and Social Problems, Columbia University, USA.
Source
Columbia J Law Soc Probl. 2004;37(3):359-411
Date
2004
Language
English
Publication Type
Article
Keywords
Access to Information - legislation & jurisprudence
Biological Specimen Banks - legislation & jurisprudence
Confidentiality - legislation & jurisprudence
Databases, Genetic - ethics - legislation & jurisprudence
Disclosure - legislation & jurisprudence
Estonia
Ethics Committees, Research
Family
Genetics, Population
Great Britain
Haplotypes - genetics
Human Genome Project
Humans
Iceland
Informed Consent - legislation & jurisprudence
Internationality
Presumed Consent - legislation & jurisprudence
Refusal to Participate - legislation & jurisprudence
Singapore
Abstract
The advent of the human genome sequence has focused research on understanding underlying genetic links to complex diseases such as cancer, asthma and heart disease. In the past few years, individual countries, such as Iceland, Estonia, Singapore and the United Kingdom, have created national databases of their citizens' DNA for comparative research. Most recently, an international consortium including Nigeria, Japan, China and the United States launched a $100 million project called the International HapMap to map the human genome according to haplotypes, blocks of DNA that contain genetic variation. Such population genetic databases present challenging ethical, social and legal issues, yet regulation of genetic information has developed sporadically, from region to region, without a consistent international standard. Without a clear understanding of the consequences of genetic research in terms of individual and community-wide discrimination and stigmatization, genetic databases raise concerns about the protection of genetic information. This Note provides a survey of the evolving landscape of population genetic databases as a legislative and public policy tool for national and international regulators. It compares different approaches to regulating the collection and use of population genetic databases in order to understand what areas of consensus are formulating a foundation for an international standard. As the first population genetics project that will span multiple countries for the collection of DNA, the International HapMap has the potential to become an influential standard for the protection of population genetic information. This Note highlights issues among the national databases and the HapMap project that raise ethical, social and legal concerns for the future and recommends further protections for both individual donors and community interests.
PubMed ID
16755693 View in PubMed
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Genomic Databases and Biobanks in Denmark.

https://arctichealth.org/en/permalink/ahliterature280292
Source
J Law Med Ethics. 2015;43(4):743-53
Publication Type
Article
Date
2015
Author
Mette Hartlev
Source
J Law Med Ethics. 2015;43(4):743-53
Date
2015
Language
English
Publication Type
Article
Keywords
Access to Information - legislation & jurisprudence
Biological Specimen Banks - legislation & jurisprudence
Confidentiality - legislation & jurisprudence
Databases, Genetic - legislation & jurisprudence
Denmark
Genetic Research - legislation & jurisprudence
Humans
Abstract
Biobanking in Denmark is regulated via patients' rights laws, data protection laws, and research ethics reviews. Danish law recognizes tissue samples as personal data for purposes of the data protection laws, meaning research with tissue samples may be subject to research ethics review, data protection laws, and patients' rights requirements depending on the circumstances of collection. However, research on information gained through whole genome sequencing is subject only to data protection laws, despite the similarity in the nature of the information. The regulatory framework treats biobank samples collected from patients differently than samples collected from research participants, particularly with respect to autonomy. Importantly, biobanks established for future unspecified research are not subject to research ethics review. Biobank-based research has gained more prominence on the national level recently, and the potential for a less fragmented and more consistent regulatory approach may emerge from this attention.
PubMed ID
26711414 View in PubMed
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The right to know about chemical hazards in Canada, 1982-2006.

https://arctichealth.org/en/permalink/ahliterature156967
Source
New Solut. 2008;18(2):233-43
Publication Type
Article
Date
2008
Author
Dave Bennett
Author Affiliation
daveandjoanne@mts.net
Source
New Solut. 2008;18(2):233-43
Date
2008
Language
English
Publication Type
Article
Keywords
Access to Information - legislation & jurisprudence
Canada
Disclosure - legislation & jurisprudence
Hazardous Substances
Humans
Information Services - legislation & jurisprudence
Occupational Exposure - legislation & jurisprudence
Occupational health - legislation & jurisprudence
Abstract
Traditionally in Canada, there are three health and safety rights: the right to participate (joint workplace health and safety committees); the right to refuse unsafe and unhealthy work; and the right to know about workplace hazards. By the end of the 1970s, the right to know had been established in law across Canada, but it was not enough to cover workplace chemical hazards in particular. The Workplace Hazardous Materials Information System (WHMIS) was a project set up by the Canadian federal government in 1982 to address the issue. This article tells the story of how labor got the progressive WHMIS agreement(1985) and how the agreement has been implemented in the following years.
PubMed ID
18511399 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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Access and benefits sharing of genetic resources and associated traditional knowledge in northern Canada: understanding the legal environment and creating effective research agreements

https://arctichealth.org/en/permalink/ahliterature284320
Source
Pages 912-920 in N. Murphy and A. Parkinson, eds. Circumpolar Health 2012: Circumpolar Health Comes Full Circle. Proceedings of the 15th International Congress on Circumpolar Health, Fairbanks, Alaska, USA, August 5-10, 2012. International Journal of Circumpolar Health 2013;72 (Suppl 1):912-920
Publication Type
Article
Date
2013
  1 document  
Author
Geary J1, Jardine CG, Guebert J, Bubela T.
Author Affiliation
School of Public Health, University of Alberta, Edmonton, Canada
Source
Pages 912-920 in N. Murphy and A. Parkinson, eds. Circumpolar Health 2012: Circumpolar Health Comes Full Circle. Proceedings of the 15th International Congress on Circumpolar Health, Fairbanks, Alaska, USA, August 5-10, 2012. International Journal of Circumpolar Health 2013;72 (Suppl 1):912-920
Date
2013
Publication Type
Article
Digital File Format
Text - PDF
Physical Holding
University of Alaska Anchorage
Keywords
Access to Information/legislation & jurisprudence
Biomedical Research/legislation & jurisprudence
Biomedical Research/organization & administration
Canada
Community-Institutional Relations/legislation & jurisprudence
Culture
Financing, Government
Genetics, Medical/legislation & jurisprudence
Genetics, Medical/organization & administration
Health Policy
Humans
Indians, North American/ethnology
Indians, North American/genetics
Indians, North American/legislation & jurisprudence
Documents
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Unlocking Health Canada's cache of trade secrets: mandatory disclosure of clinical trial results.

https://arctichealth.org/en/permalink/ahliterature131803
Source
CMAJ. 2012 Feb 7;184(2):194-9
Publication Type
Article
Date
Feb-7-2012
Author
Matthew Herder
Author Affiliation
Faculty of Medicine, Dalhousie University, Halifax, NS. Matthew.Herder@Dal.ca
Source
CMAJ. 2012 Feb 7;184(2):194-9
Date
Feb-7-2012
Language
English
Publication Type
Article
Keywords
Access to Information - legislation & jurisprudence
Canada
Clinical Trials as Topic - legislation & jurisprudence
Confidentiality - legislation & jurisprudence
Drug Industry - legislation & jurisprudence
Government Agencies - legislation & jurisprudence
Humans
Mandatory Programs - legislation & jurisprudence
Off-Label Use - legislation & jurisprudence
Prescription Drugs - adverse effects
Public Policy - legislation & jurisprudence
Registries
Notes
Cites: CMAJ. 2004 Feb 17;170(4):487-914970096
Cites: Lancet. 2004 Apr 24;363(9418):1341-515110490
Cites: CMAJ. 2004 May 25;170(11):1678-8615159366
Cites: Ann Intern Med. 2004 Sep 21;141(6):477-815355883
Cites: N Engl J Med. 2004 Oct 21;351(17):1707-915470193
Cites: CMAJ. 2011 Jul 12;183(10):1125-621502342
Cites: N Engl J Med. 2008 Jan 17;358(3):252-6018199864
Cites: CMAJ. 2008 Feb 12;178(4):428-3118268270
Cites: Curr Med Res Opin. 2008 Jun;24(6):1683-918462565
Cites: PLoS Med. 2008 Nov 25;5(11):e217; discussion e21719067477
Cites: BMJ. 2011;342:d257021511787
Cites: BMJ. 2005 Apr 23;330(7497):956-815845980
PubMed ID
21876028 View in PubMed
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31 records – page 1 of 4.