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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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AIDS and ethics: an analytic framework.

https://arctichealth.org/en/permalink/ahliterature232665
Source
Can Fam Physician. 1988 Aug;34:1787-92
Publication Type
Article
Date
Aug-1988
Author
Philip B Berger
Source
Can Fam Physician. 1988 Aug;34:1787-92
Date
Aug-1988
Language
English
Publication Type
Article
Keywords
AIDS Serodiagnosis
Acquired Immunodeficiency Syndrome
Canada
Child
Civil Rights
Confidentiality
Duty to Warn
Emigration and Immigration
General Surgery
HIV Seropositivity
Health education
Humans
Jurisprudence
Mass Screening
Patient Care
Patients
Physicians
Privacy
Public Health
Public Policy
Quarantine
Substance-Related Disorders
Tissue Donors
Abstract
The acquired immunodeficiency syndrome (AIDS) pandemic has raised difficult ethical issues in public policy formulation and in the care of patients infected with the human immunodeficiency virus (HIV). Many issues relate to measures proposed for the protection of the public from HIV infection. This article presents an analytic framework from which these measures can be rationally evaluated. Specific measures are assessed on the basis of their likelihood of success, in relation to their justification for infringement on individual rights, and with reference to other less intrusive measures that could accomplish the same objective. Case histories are discussed which raise ethical dilemmas in the care of HIV infected and high-risk patients. The application of this framework could assist physicians in analysing public health policy and making judgements in individual clinical situations.
Notes
Cites: JAMA. 1987 Oct 23-30;258(16):2298-30011652513
Cites: JAMA. 1987 Mar 13;257(10):1357-663546744
Cites: JAMA. 1987 Oct 9;258(14):19403656608
Cites: JAMA. 1987 Oct 9;258(14):1939-403656607
Cites: JAMA. 1987 Oct 9;258(14):1924-83309386
Cites: Lancet. 1987 Sep 12;2(8559):589-932887886
Cites: N Engl J Med. 1987 Oct 29;317(18):1125-353309656
Cites: JAMA. 1988 Mar 4;259(9):1353-62963151
Cites: JAMA. 1988 Mar 4;259(9):1357-93276950
Cites: N Engl J Med. 1988 Feb 18;318(7):444-73340123
Cites: JAMA. 1988 Jun 24;259(24):3609-103131557
Cites: Lancet. 1988 May 14;1(8594):11182896956
Cites: JAMA. 1988 May 20;259(19):2898-93367458
Cites: N Engl J Med. 1988 Feb 25;318(8):473-83422337
PubMed ID
11650250 View in PubMed
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AIDS quarantine law in the international community: health and safety measures or human rights violations?

https://arctichealth.org/en/permalink/ahliterature8076
Source
Loyola Los Angel Int Comp Law J. 1993 Jun;15(4):1001-28
Publication Type
Article
Date
Jun-1993

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

Attitudes among sperm donors in 1992 and 2002: a Danish questionnaire survey.

https://arctichealth.org/en/permalink/ahliterature78438
Source
Acta Obstet Gynecol Scand. 2007;86(3):327-33
Publication Type
Article
Date
2007
Author
Ernst Erik
Ingerslev Hans Jakob
Schou Ole
Stoltenberg Meredin
Author Affiliation
Department of Gynaecology and Obstetrics, Skejby Sygehus, University Hospital of Aarhus, Denmark. erik.ernst@dadlnet.dk
Source
Acta Obstet Gynecol Scand. 2007;86(3):327-33
Date
2007
Language
English
Publication Type
Article
Keywords
Adult
Altruism
Attitude to Health
Denmark
Economics
Humans
Male
Motivation
Privacy
Questionnaires
Spermatozoa
Tissue Donors - psychology
Abstract
BACKGROUND: Sweden prohibited anonymous sperm donation in 1985 and Norway in 2005. In recent years the question of continued use of sperm from anonymous sperm donors for insemination in couples and the question of insemination of single and lesbian women have been vividly debated in Denmark. This survey examines the sperm donors' attitude towards these questions and describes any changes in attitude between 1992 and 2002. The objective is to investigate the likely consequences of abolishing anonymous sperm donation in Denmark. METHODS: A questionnaire survey carried out among donors at a private Danish sperm bank, Cryos-International Sperm Bank Ltd. Over a period of 9 weeks in 2002 an anonymous questionnaire was handed out to all donors who were in contact with the sperm bank. The results were compared to a questionnaire survey carried out in 1992 at the same sperm bank. RESULTS: In 2002, 25% (19% approved; 35% non-approved) of the donors stated that they would continue as donors if anonymity was abolished, whereas in 1992 the number was 32%. But when donors were asked whether they would accept that the children could contact them, only 22% agreed in 1992 and 13% (15% approved; 10% non-approved) in 2002. Altruistic as well as financial motives were the main factors for becoming a donor in both 1992 and 2002. Approximately 50% would accept sperm donation to lesbians in both surveys. In 2002 approximately one third was positive towards donation to single women. CONCLUSION: Maintaining anonymity is still important for the vast majority of the donors.
PubMed ID
17364308 View in PubMed
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Attitudes towards embryo donation among infertile couples with frozen embryos.

https://arctichealth.org/en/permalink/ahliterature113181
Source
Hum Reprod. 2013 Sep;28(9):2432-9
Publication Type
Article
Date
Sep-2013
Author
K. Wånggren
J. Alden
T. Bergh
A. Skoog Svanberg
Author Affiliation
Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden. kjell.wanggren@kbh.uu.se
Source
Hum Reprod. 2013 Sep;28(9):2432-9
Date
Sep-2013
Language
English
Publication Type
Article
Keywords
Adult
Attitude to Health
Blastocyst
Cross-Sectional Studies
Cryopreservation
Embryo Disposition - adverse effects
Embryo Research
Embryo Transfer - adverse effects
Family Characteristics
Female
Fertilization in Vitro
Humans
Infertility, Female - therapy
Infertility, Male
Male
Privacy
Questionnaires
Single Person
Sweden
Abstract
What are the attitudes towards different aspects of embryo donation among Swedish infertile couples who have surplus cryopreserved embryos?
Nearly three-quarters of infertile couples with surplus embryos were in favour of embryo donation. A majority of respondents were also in favour of embryos being donated for research.
Currently, embryo donation to other infertile couples is prohibited by law in Sweden. Encouraging results have been published from countries allowing embryo donation, although it is a complex procedure associated with many emotional, ethical, legal and psychosocial aspects.
This cross-sectional study included 471 infertile couples (942 patients) treated during the period March 2006 to March 2009.
Infertile couples who had been treated at a Swedish university-based hospital and private IVF clinic and who had cryopreserved embryos were sent questionnaires with questions regarding socio-demographic data and their attitudes towards embryo donation.
The response rate to the questionnaire was 58%. Of the respondents, 76% supported the donation of surplus embryos to other infertile couples, but there were divided opinions regarding the disclosure of the genetic parents' identities. Close to 60% of the participants indicated that donations of embryos should be allowed for research and about 45% of the participants approved donations of embryos to single women.
The relatively low response rate and the hypothetical nature of the questions may limit the validity of the results.
The results from the study indicate that cryopreserved embryos may be available for donation to other infertile couples, particularly where restrictions can be set on recipient characteristics.
PubMed ID
23756704 View in PubMed
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223 records – page 1 of 23.