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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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Attitudes about donor information differ greatly between IVF couples using their own gametes and those receiving or donating oocytes or sperm.

https://arctichealth.org/en/permalink/ahliterature280849
Source
J Assist Reprod Genet. 2016 Jun;33(6):703-10
Publication Type
Article
Date
Jun-2016
Author
Agneta Skoog Svanberg
G. Sydsjö
M. Bladh
C. Lampic
Source
J Assist Reprod Genet. 2016 Jun;33(6):703-10
Date
Jun-2016
Language
English
Publication Type
Article
Keywords
Access to Information - legislation & jurisprudence - psychology
Adolescent
Adult
Attitude
Family Characteristics
Female
Fertilization in Vitro - legislation & jurisprudence - psychology
Humans
Longitudinal Studies
Male
Oocyte Donation - legislation & jurisprudence - psychology
Spermatozoa
Sweden
Tissue Donors - legislation & jurisprudence - psychology
Abstract
The objective of the study is to examine attitudes towards aspects of donation treatment based on a national Swedish sample of gamete donors and couples undergoing assisted reproductive techniques (ART).
The present study was part of the Swedish study on gamete donation, a prospective longitudinal cohort study including all fertility clinics performing gamete donation in Sweden. The sample comprised 164 oocyte donors, 89 sperm donors, 251 people treated with their own gametes (in vitro fertilisation (IVF)), 213 oocyte recipients and 487 sperm recipients. A study-specific questionnaire was used.
Attitudes vary widely between couples using their own gametes for IVF and those receiving or donating oocyte or sperm. The groups differed in their responses to most questions. Oocyte and sperm donors were more likely to agree with the statements "The donor should be informed if the donation results in a child" and "Offspring should receive some information about the donor during mature adolescence" than recipients of donated gametes and couples treated with their own gametes.
Donor recipients, IVF couples and donors expressed different attitudes towards openness and information when it came to gamete donation, and those differences seemed to depend on their current reproductive situation.
Notes
Cites: Med J Aust. 2003 Feb 3;178(3):127-912558484
Cites: Hum Reprod. 2013 Sep;28(9):2432-923756704
Cites: Hum Reprod. 2004 Oct;19(10):2415-915310730
Cites: Public Underst Sci. 2009 Jan;18(1):61-7719579535
Cites: Hum Reprod. 2009 Aug;24(8):1930-819414865
Cites: Ups J Med Sci. 2013 Aug;118(3):187-9523786323
Cites: J Assist Reprod Genet. 2009 May;26(5):231-819472047
Cites: Hum Reprod. 2008 Apr;23(4):904-1118258766
Cites: Psychol Health. 2011 Sep;26(9):1113-2721929476
PubMed ID
27059774 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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Canada clamps down on access to drug safety data.

https://arctichealth.org/en/permalink/ahliterature118602
Source
Lancet. 2012 Nov 24;380(9856):1805
Publication Type
Article
Date
Nov-24-2012
Author
Paul C Webster
Source
Lancet. 2012 Nov 24;380(9856):1805
Date
Nov-24-2012
Language
English
Publication Type
Article
Keywords
Access to Information - legislation & jurisprudence
British Columbia
Drug Evaluation
Humans
Safety
PubMed ID
23189329 View in PubMed
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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

The confidentiality of patient and physician information in pharmacy prescription records.

https://arctichealth.org/en/permalink/ahliterature181323
Source
CMAJ. 2004 Mar 2;170(5):815-6
Publication Type
Article
Date
Mar-2-2004
Author
Dick E Zoutman
B Douglas Ford
Assil R Bassili
Author Affiliation
Department of Pathology and Molecular Medicine, Queen's University, 76 Stuart Street, Kingston, Ontario K7L 2V7, Canada. zoutman@cliff.path.queensu.ca
Source
CMAJ. 2004 Mar 2;170(5):815-6
Date
Mar-2-2004
Language
English
Publication Type
Article
Keywords
Access to Information - legislation & jurisprudence
Canada
Confidentiality - legislation & jurisprudence
Disclosure - legislation & jurisprudence
Drug Prescriptions
Humans
Informed Consent - legislation & jurisprudence
Medical Records Systems, Computerized - legislation & jurisprudence
Pharmacy
Physician-Patient Relations
Notes
Cites: JAMA. 2000 Jan 19;283(3):373-8010647801
Cites: J Law Med Ethics. 1997 Summer-Fall;25(2-3):98-110, 8211066504
Cites: CMAJ. 2000 Oct 31;163(9):1146-811079059
Cites: CMAJ. 2002 Aug 20;167(4):393-612197705
Cites: BMJ. 2003 Feb 15;326(7385):37312586673
Cites: CMAJ. 2003 Jul 8;169(1):5, 712847016
Cites: CMAJ. 1998 Oct 20;159(8):997-10169834730
Comment In: CMAJ. 2004 Sep 28;171(7):711-2; author reply 71215451823
PubMed ID
14993178 View in PubMed
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[Does insemination with non-anonymous sperm donor have a future?]

https://arctichealth.org/en/permalink/ahliterature30146
Source
Tidsskr Nor Laegeforen. 2004 Sep 9;124(17):2263-5
Publication Type
Article
Date
Sep-9-2004
Author
Trine B Haugen
Tom Tanbo
Author Affiliation
Seksjon for barnløshet og assistert befruktning, Kvinneklinikken, Rikshospitalet, 0027 Oslo. t.b.haugen@rh.uio.no
Source
Tidsskr Nor Laegeforen. 2004 Sep 9;124(17):2263-5
Date
Sep-9-2004
Language
Norwegian
Publication Type
Article
Keywords
Access to Information - legislation & jurisprudence
Child
Child Advocacy - legislation & jurisprudence
Europe
Humans
Insemination, Artificial, Heterologous - legislation & jurisprudence - trends
Male
Norway
Tissue Donors - legislation & jurisprudence
PubMed ID
15356696 View in PubMed
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Federal government unveils modest transparency initiative.

https://arctichealth.org/en/permalink/ahliterature136007
Source
CMAJ. 2011 Apr 19;183(7):E383-4
Publication Type
Article
Date
Apr-19-2011

31 records – page 1 of 4.