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Access, relevance, and control in the research process: lessons from Indian country.

https://arctichealth.org/en/permalink/ahliterature3424
Source
J Aging Health. 2004 Nov;16(5 Suppl):58S-77S
Publication Type
Article
Date
Nov-2004
Author
Spero M Manson
Eva Garroutte
R Turner Goins
Patricia Nez Henderson
Author Affiliation
American Indian and Alaska Native Programs, University of Colorado Health Sciences Center, Nighthorse Campbell Native Health Building, Mail Stop F800, P.O. Box 6508, Aurora, CO 80045-0508, USA. spero.manson@uchsc.edu
Source
J Aging Health. 2004 Nov;16(5 Suppl):58S-77S
Date
Nov-2004
Language
English
Publication Type
Article
Keywords
Aged
Communication
Culture
Ethics, Research
Humans
Indians, North American
Long-Term Care - utilization
Physician-Patient Relations
Research Design
Research Support, U.S. Gov't, P.H.S.
Smoking
United States
Abstract
OBJECTIVE: To illustrate successful strategies in working with American Indian (AI) and Alaska Native (AN) communities in aging and health research by emphasizing access, local relevance, and decision-making processes. METHODS: Case examples of health studies involving older AIs (greater than or equal to 50 years) among Eastern Band Cherokee Indians, a federally recognized reservation; the Cherokee Nation, a rural, nonreservation, tribal jurisdictional service area; and Lakota tribal members living in Rapid City, South Dakota. RESULTS: Local review and decision making reflect the unique legal and historical factors underpinning AI sovereignty. Although specific approval procedures vary, there are common expectations across these communities that can be anticipated in conceptualizing, designing, and implementing health research among native elders. CONCLUSIONS: Most investigators are unprepared to address the demands of health research in AI communities. Community-based participatory research in this setting conflicts with investigators' desire for academic freedom and scientific independence. Successful collaboration promises to enhance research efficiencies and move findings more quickly to clinical practice.
PubMed ID
15448287 View in PubMed
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Alaska native people's perceptions, understandings, and expectations for research involving biological specimens.

https://arctichealth.org/en/permalink/ahliterature123802
Source
Int J Circumpolar Health. 2012;71:18642
Publication Type
Article
Date
2012
Author
Vanessa Y Hiratsuka
Jennifer K Brown
Theresa J Hoeft
Denise A Dillard
Author Affiliation
Southcentral Foundation, Research Department, Anchorage, AK 99508, USA. vhiratsuka@scf.cc
Source
Int J Circumpolar Health. 2012;71:18642
Date
2012
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Alaska
Ethics, Research
Female
Focus Groups
Health Knowledge, Attitudes, Practice
Humans
Informed consent
Male
Middle Aged
Population Groups - psychology
Research
Specimen Handling - methods
Young Adult
Abstract
Members of racially and ethnically diverse groups have been persistently underrepresented in biomedical research in general, possibly due to mistrust with the medical and research community. This article describes the perceptions, understandings, and expectations of Alaska Native people about research involving the collection and storage of biological specimens.
Stratified focus groups.
Twenty-nine focus groups with Alaska Native people (n = 178) were held in 14 locations using a semi-structured moderator guide. ATLAS.ti was used for thematic analysis through iterative readings and coding. Alaska Native peoples' perceptions, understandings, and expectations of researcher beneficence, informed consent processes, and provision of research findings were elicited.
Alaska Native people desired extensive disclosure of information beyond that typically provided in consent and results dissemination processes. Information germane to the motivation and intent of researchers and specifics of specimen storage and destruction were specifically requested. A clear and extensive process of informed consent and continued improvements in sharing results may enhance the transparency of research intent, conduct, and use of obtained results among Alaska Native people. Meeting expectations may improve relationships between researchers and the Alaska Native population which could result in increased research participation. Our findings offer a guide for researchers and communities when planning and implementing research with biological specimens.
Notes
Cites: Scand J Public Health. 2004;32(3):224-915204184
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PubMed ID
22663942 View in PubMed
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Alzheimer disease ethics--informed consent and related issues in clinical trials: results of a survey among the members of the Research Ethics Committees in Sweden.

https://arctichealth.org/en/permalink/ahliterature71207
Source
Int Psychogeriatr. 2003 Jun;15(2):157-70
Publication Type
Article
Date
Jun-2003
Author
Gunbrith Peterson
Anders Wallin
Author Affiliation
Janssen-Cilag AB, Sollentuna, Sweden.
Source
Int Psychogeriatr. 2003 Jun;15(2):157-70
Date
Jun-2003
Language
English
Publication Type
Article
Keywords
Adult
Aged
Alzheimer Disease - diagnosis - drug therapy
Attitude of Health Personnel
Clinical Trials - ethics
Comorbidity
Data Collection
Ethics Committees
Ethics, Medical
Ethics, Research
Female
Humans
Informed Consent - legislation & jurisprudence
Legal Guardians
Male
Mental Competency - legislation & jurisprudence
Middle Aged
Patient Participation - legislation & jurisprudence
Patient Selection - ethics
Psychotic Disorders - diagnosis
Research Support, Non-U.S. Gov't
Sweden
Abstract
The rapid advances in biomedical sciences have induced special moral and ethical attitudes, which ought to be taken into account. One of the most essential issues is the principles for participation in research of subjects with reduced decision-making capacity. We conducted a questionnaire survey among members of the research ethics committees in Sweden to find out their attitudes to a range of ethical issues related to research on subjects with Alzheimer's disease. One hundred thirty-six of those approached responded (66%), and 117 of the responses (56%) were considered substantially complete. There were 16 questions with fixed reply alternatives. Some central questions concerned the informed consent process. With a few exceptions, there were no significant differences in attitudes between the experts and laypersons, between persons of different ages, and between men and women. However, women and laypersons were in general keener to preserve the patient's integrity and the experts were more willing than the laypersons to allow participation of subjects with dementia in placebo-controlled trials.
PubMed ID
14620074 View in PubMed
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Alzheimer's research: physicians begin to tread in an ethical minefield.

https://arctichealth.org/en/permalink/ahliterature231076
Source
CMAJ. 1989 Mar 15;140(6):726-8, 730
Publication Type
Article
Date
Mar-15-1989

An assessment of educational needs in research ethics.

https://arctichealth.org/en/permalink/ahliterature178062
Source
NCEHR Commun. 2000;10(2):21-4
Publication Type
Article
Date
2000
Author
D M Kaufman
Author Affiliation
Division of Medical Education, Dalhousie University, Canada.
Source
NCEHR Commun. 2000;10(2):21-4
Date
2000
Language
English
Publication Type
Article
Keywords
Canada
Education, Medical, Continuing
Ethics, Research - education
Human Experimentation - ethics
Humans
Needs Assessment
Questionnaires
PubMed ID
15468470 View in PubMed
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An ethicist's commentary on avoiding impropriety in corporate sponsorship of conferences and journals.

https://arctichealth.org/en/permalink/ahliterature161505
Source
Can Vet J. 2007 Aug;48(8):792
Publication Type
Article
Date
Aug-2007

Animal spare parts? A Canadian public consultation on xenotransplantation.

https://arctichealth.org/en/permalink/ahliterature187235
Source
Sci Eng Ethics. 2002 Oct;8(4):579-91
Publication Type
Article
Date
Oct-2002
Author
Edna F Einsiedel
Heather Ross
Author Affiliation
Communication Studies Program, Faculty of Communication and Culture, University of Calgary, Calgary, Alberta T2N 1N4, Canada. einsiede@ucalgary.ca
Source
Sci Eng Ethics. 2002 Oct;8(4):579-91
Date
Oct-2002
Language
English
Publication Type
Article
Keywords
Animal Rights
Animals
Attitude to Health
Bioethics
Canada
Clinical Trials as Topic
Consumer Participation
Ethics, Research
Health Policy
Humans
National Health Programs - ethics
Technology Assessment, Biomedical - ethics
Transplantation, Heterologous - ethics - psychology
Abstract
Xenotransplantation, or the use of animal cells, tissues and organs for humans, has been promoted as an important solution to the worldwide shortage of organs. While scientific studies continue to be done to address problems of rejection and the possibility of animal-to-human virus transfer, socio-ethical and legal questions have also been raised around informed consent, life-long monitoring, animal welfare and animal rights, and appropriate regulatory practices. Many calls have also been made to consult publics before policy decisions are made. This paper describes the Canadian public consultation process on xenotransplantation carried out by the Canadian Public Health Association in an arm's length process from Health Canada, the ministry overseeing government health policy and regulation. Focusing on six citizen for a conducted around the country patterned after the citizen jury deliberative approach, the paper describes the citizen panelists' recommendations to hold off on proceeding with clinical trials and the rationales behind this recommendation. The consultation process is discussed in the context of constructive technology assessment, a framework which argues for broader input into earlier stages of technology innovation, particularly at the technology design stage.
PubMed ID
12501726 View in PubMed
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An integrative framework for conducting palliative care research with First Nations communities.

https://arctichealth.org/en/permalink/ahliterature144141
Source
J Palliat Care. 2010;26(1):47-53
Publication Type
Article
Date
2010
Author
Holly Prince
Mary Lou Kelley
Author Affiliation
Centre for Education and Research on Aging and Health, and School of Social Work, Lakehead University, 955 Oliver Road, Thunder Bay, Ontario, Canada P7B 5E1. hprince@lakeheadu.ca
Source
J Palliat Care. 2010;26(1):47-53
Date
2010
Language
English
Publication Type
Article
Keywords
Community-Based Participatory Research
Community-Institutional Relations
Cultural Competency
Ethics, Research
Health Services, Indigenous - organization & administration
Humans
Indians, North American
Ontario
Palliative Care - organization & administration
Program Development
Notes
Erratum In: J Palliat Care. 2011 Autumn;27(3):preceding 187
PubMed ID
20402186 View in PubMed
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An investigation of embryo donation, informed consent, and research oversight in Canadian human embryonic stem cell research.

https://arctichealth.org/en/permalink/ahliterature159993
Source
J Obstet Gynaecol Can. 2007 Dec;29(12):997-1002
Publication Type
Article
Date
Dec-2007
Author
Erin Nelson
Ubaka Ogbogu
Timothy Caulfield
Author Affiliation
Health Law Institute, Faculty of Law, University of Alberta, Edmonton AB.
Source
J Obstet Gynaecol Can. 2007 Dec;29(12):997-1002
Date
Dec-2007
Language
English
Publication Type
Article
Keywords
Canada
Cryopreservation
Embryo Research - ethics - legislation & jurisprudence
Embryonic Stem Cells
Ethics, Research
Guideline Adherence
Humans
Informed consent
Questionnaires
Abstract
To investigate compliance with applicable regulations by Canadian human embryonic stem cell (hESC) researchers and fertility clinics involved in providing embryos for their research, and to ascertain actual consent practices in the hESC research context.
Telephone interviews were conducted with all hESC researchers, and email interviews were conducted with fertility clinics that provide embryos to these researchers. Consent forms currently used for donation of embryos to hESC research were reviewed. Separate questionnaires were used for the researchers and clinics.
Three of four clinics responded. Of the clinics that responded, each had provided embryos for hESC research to at least one of the researchers. Despite considerable policy attention given to hESC research, very few researchers and clinics are actually involved in the research in Canada. Only cryopreserved embryos are currently being used in hESC research, but one researcher has applied to use fresh embryos. Fertility clinics play a primary role in the consent process, and researchers have no contact with patients/donors. Although representations have been made in academic literature and the popular press suggesting a lack of compliance by Canadian hESC researchers, researchers and clinics report that they are in substantial compliance with applicable regulations. The researchers appear to be very conscious of the ethics of hESC research. In addition, they state that they are willing to follow the rules, but they are frustrated by the lack of regulatory clarity and by delays in the research oversight process.
Empirical research on perceptions other stakeholders (donors, research ethics boards etc.) have of the hESC research process appears essential.
PubMed ID
18053386 View in PubMed
Less detail
Source
Can Oncol Nurs J. 2014;24(3):218-9
Publication Type
Article
Date
2014
Author
Blair Henry
Source
Can Oncol Nurs J. 2014;24(3):218-9
Date
2014
Language
English
French
Publication Type
Article
Keywords
Canada
Clinical Trials as Topic
Colorectal Neoplasms - surgery
Ethics, Research
Humans
PubMed ID
25189062 View in PubMed
Less detail

153 records – page 1 of 16.