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Genetics on stage: public engagement in health policy development on preimplantation genetic diagnosis.

https://arctichealth.org/en/permalink/ahliterature152495
Source
Soc Sci Med. 2009 Apr;68(8):1472-80
Publication Type
Article
Date
Apr-2009
Author
Susan M Cox
Magdalena Kazubowski-Houston
Jeff Nisker
Author Affiliation
University of British Columbia, The W. Maurice Young Centre for Applied Ethics, Vancouver, BC, Canada V6T 1Z2. suecox@interchange.ubc.ca
Source
Soc Sci Med. 2009 Apr;68(8):1472-80
Date
Apr-2009
Language
English
Publication Type
Article
Keywords
Canada
Consumer Participation
Drama
Focus Groups
Health Policy
Humans
Preimplantation Diagnosis
Public Opinion
Abstract
Arts-based approaches to public engagement offer unique advantages over traditional methods of consultation. Here we describe and assess our use of theatre as a method of public engagement in the development of health policy on preimplantation genetic diagnosis, a controversial method for selecting the genetic characteristics of embryos created through in vitro fertilization. Funding from the Canadian Institutes for Health Research and Health Canada supported 16 performances of the play Orchids in Vancouver, Toronto, and Montréal and post-performance discussion in English and French (with Hubert Doucet) in 2005. A total of 741 individuals attended. The methods used to assess audience engagement and elicit policy-relevant dialogue included in-theatre observation of audience responses, moderated post-performance large audience discussion and focus groups, audience feedback forms and researcher fieldnotes. Emphasizing process and context over emerging outcomes, we reflect on the distinctive contributions of theatre in stimulating public engagement and the need to utilize multiple methods to adequately assess these contributions. We suggest continued dialogue about the possible uses of theatre in health policy development and conclude that greater clarity is needed with regard to citizens' (as well as specific stakeholders, policy makers' and sponsors') desired outcomes if there is to be a suitably nuanced and reflexive basis for assessing the effectiveness of various strategies for public engagement.
PubMed ID
19233530 View in PubMed
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Increasing bioethics education in preclinical medical curricula: what ethical dilemmas do clinical clerks experience?

https://arctichealth.org/en/permalink/ahliterature151882
Source
Acad Med. 2009 Apr;84(4):498-504
Publication Type
Article
Date
Apr-2009
Author
Emily Kelly
Jeff Nisker
Author Affiliation
Family Medicine, The Schulich School of Medicine & Dentistry, The University of Western Ontario, London, ON, Canada.
Source
Acad Med. 2009 Apr;84(4):498-504
Date
Apr-2009
Language
English
Publication Type
Article
Keywords
Attitude of Health Personnel
Bioethics - education
Clinical Clerkship
Curriculum
Education, Medical, Undergraduate
Humans
Informed Consent - ethics
Medicine
Ontario
Patient Care - ethics
Resuscitation Orders - ethics
Specialization
Students, Medical - psychology
Abstract
The increase in bioethics education in preclinical curricula enables medical students to recognize ethical issues and determine right action. The authors sought to explore the ethical dilemmas medical students experience during clinical clerkships.
Following an e-mail invitation, 100 of 104 graduating medical students allowed their final ethics assignment, a written description of an ethical dilemma experienced during clinical clerkship, to be analyzed. After all identifiers were removed, the narratives underwent qualitative analysis and were then reanalyzed using Jameton's determinants of moral action.
Four themes emerged: the clinical service rotation, target, source, and nature of the ethical dilemma. For many clinical clerks, the ethical dilemma arose because they recognized an ethical issue but neither brought it to their supervisors nor resolved it themselves for fear of incurring disfavor. The source of the ethical dilemma was most frequently the student's supervisor (46%), which may explain why, although all narratives demonstrated the Jameton criteria of "moral sensitivity" and 76% demonstrated "moral judgment," only 24% indicated "moral motivation" and only 4% suggested "moral courage." Patients were the most frequent target (76%), followed by students (14%). Students reported informed consent (18%) and inadequate care (17%) as the most common types of dilemmas under the nature theme.
Clinical clerks' experiences of ethical dilemmas might be mitigated if residency education and professional development mirrored the increase in preclinical ethics education, if ethics training included encouraging students to discuss ethical issues as they arise, and if educators developed innovative models of student evaluation.
PubMed ID
19318789 View in PubMed
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Information-sharing to promote informed choice in prenatal screening in the spirit of the SOGC clinical practice guideline: a proposal for an alternative model.

https://arctichealth.org/en/permalink/ahliterature126481
Source
J Obstet Gynaecol Can. 2012 Mar;34(3):269-75
Publication Type
Article
Date
Mar-2012
Author
Meredith Vanstone
Elizabeth Anne Kinsella
Jeff Nisker
Author Affiliation
The University of Western Ontario, London ON, Canada.
Source
J Obstet Gynaecol Can. 2012 Mar;34(3):269-75
Date
Mar-2012
Language
English
Publication Type
Article
Keywords
Canada
Choice Behavior
Decision Making
Female
Genetic Counseling - methods
Humans
Information Dissemination
Models, Theoretical
Pregnancy
Prenatal Diagnosis
Abstract
The 2011 SOGC clinical practice guideline "Prenatal Screening for Fetal Aneuploidy in Singleton Pregnancies" recommends that clinicians offer prenatal screening to all pregnant women and provide counselling in a non-directive manner. Non-directive counselling is intended to facilitate autonomous decision-making and remove the clinician's views regarding a particular course of action. However, recent research in genetic counselling raises concerns that non-directive counselling is neither possible nor desirable, and that it may not be the best way to facilitate informed choice. We propose an alternative model of information-sharing specific to prenatal screening that combines attributes of the models of informative decision-making and shared decision-making. Our proposed model is intended to provide clinicians with a strategy to communicate information about prenatal screening in a way that facilitates a shared deliberative process and autonomous decision-making. Our proposed model may better prepare a pregnant woman to make an informed choice about participating in prenatal screening on the basis of her consideration of the medical information provided by her clinician and her particular circumstances and values.
PubMed ID
22385671 View in PubMed
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Informed consent to donate embryos for research purposes.

https://arctichealth.org/en/permalink/ahliterature154807
Source
J Obstet Gynaecol Can. 2008 Sep;30(9):824-36
Publication Type
Article
Date
Sep-2008
Author
Erin Nelson
Roxanne Mykitiuk
Jeff Nisker
Jan Christilaw
Julie Anne Corey
Maureen Heaman
Abby Lippman
Sandra Rodgers
Jodi Shapiro
Susan Sherwin
Author Affiliation
Edmonton AB.
Source
J Obstet Gynaecol Can. 2008 Sep;30(9):824-36
Date
Sep-2008
Language
English
Publication Type
Article
Keywords
Canada
Directed Tissue Donation
Embryo Research
Humans
Informed consent
Tissue Donors
Abstract
To develop guidance for clinicians participating in the informed choice process with respect to the donation of human embryos for research purposes.
1. As indicated in the Canadian Institutes of Health Research Guidelines and the Assisted Human Reproduction Act, specific consent from both the gamete and embryo providers is required before embryos can be used for research purposes. The gamete donors may be different individuals than the embryo providers when donated gametes are used to create embryos. 2. The consent process should inform potential donors of the possible types of (and for final consent, the specific) research project(s) for which the embryos will be used; the risks involved in donating embryos to research, such as not having these embryos available for their reproductive purposes; the fact that the woman/couple will not benefit personally from donating embryos to research; the potential for commercial gain by others; the possibility that they will be contacted in future about the disposition of the embryos; the fact that confidentiality cannot be absolutely guaranteed. 3. Designation of cryopreserved embryos no longer be required for reproductive purposes to be donated to research, donated to another couple, or discarded should be discussed prior to gamete retrieval and made at the time of cryopreservation, with the understanding that in the future, final consent will be requested. The final decision as to the donation of cryopreserved embryos research should not be made until after the woman/ couple decide they no longer require the embryos for their reproductive purposes. The decision to end cryopreservation should be made separately from the decision regarding disposition of the embryos. The woman/couple will have to be re-contacted regarding the final disposition of their embryos. 4. As a result of lack of scientific data regarding the predictability of microscopic characterization of embryos and potential for pregnancy, it is recommended that all women/couples be offered the opportunity to cryopreserve all embryos not transferred during the treatment cycle and be informed that a failure to cryopreserve all embryos may increase the chance of having to undergo an additional in vitro fertilization cycle to achieve reproductive goals. 5. Research participants should be informed that they may withdraw their consent at any time before the embryos are thawed for research purposes, or, in the case of stem cell research, before a stem cell line is created. 6. Potential donors should be informed that their medical care will not be affected by their decision regarding embryo donation.
Notes
Comment In: J Obstet Gynaecol Can. 2009 Feb;31(2):111; author reply 111-219382392
PubMed ID
18845052 View in PubMed
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Lack of timely access to tubal ligation increases risks of unintended pregnancy.

https://arctichealth.org/en/permalink/ahliterature170639
Source
Womens Health Issues. 2006 Jan-Feb;16(1):1-3
Publication Type
Article

A measurement tool to assess culture change regarding patient safety in hospital obstetrical units.

https://arctichealth.org/en/permalink/ahliterature142680
Source
J Obstet Gynaecol Can. 2010 Jun;32(6):590-7
Publication Type
Article
Date
Jun-2010
Author
J Kenneth Milne
Nicole Bendaly
Leslie Bendaly
Jill Worsley
John Fitzgerald
Jeff Nisker
Author Affiliation
Department of Obstetrics and Gynaecology, Schulich School of Medicine and Dentistry, The University of Western Ontario, London, ON.
Source
J Obstet Gynaecol Can. 2010 Jun;32(6):590-7
Date
Jun-2010
Language
English
Publication Type
Article
Keywords
Hospital Units
Humans
Medical Errors - prevention & control
Obstetrics and Gynecology Department, Hospital
Ontario
Organizational Culture
Pilot Projects
Questionnaires
Safety
Abstract
Clinical error in acute care hospitals can only be addressed by developing a culture of safety. We sought to develop a cultural assessment survey (CAS) to assess patient safety culture change in obstetrical units.
Interview prompts and a preliminary questionnaire were developed through a literature review of patient safety and "high reliability organizations," followed by interviews with members of the Managing Obstetrical Risk Efficiently (MOREOB) Program of the Society of Obstetricians and Gynaecologists of Canada. Three hundred preliminary questionnaires were mailed, and 21 interviews and 9 focus groups were conducted with the staff of 11 hospital sites participating in the program. To pilot test the CAS, 350 surveys were mailed to staff in participating hospitals, and interviews were conducted with seven nurses and five physicians who had completed the survey. Reliability analysis was conducted on four units that completed the CAS prior to and following the implementation of the first MOREOB module.
Nineteen values and 105 behaviours, practices, and perceptions relating to patient safety were identified and included in the preliminary questionnaire, of which 143 of 300 (47.4%) were returned. Among the 220 cultural assessment surveys returned (62.9%), six cultural scales emerged: (1) patient safety as everyone's priority; (2) teamwork; (3) valuing individuals; (4) open communication; (5) learning; and (6) empowering individuals. The reliability analysis found all six scales to have internal reliability (Cronbach alpha), ranging from 0.72 (open communication) to 0.84 (valuing individuals).
The CAS developed for this study may enable obstetrical units to assess change in patient safety culture.
PubMed ID
20569541 View in PubMed
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Medical students' first clinical experiences of death.

https://arctichealth.org/en/permalink/ahliterature144818
Source
Med Educ. 2010 Apr;44(4):421-8
Publication Type
Article
Date
Apr-2010
Author
Emily Kelly
Jeff Nisker
Author Affiliation
Department of Family Medicine, Schulich School of Medicine & Dentistry, University of Western Ontario, London, Ontario, Canada.
Source
Med Educ. 2010 Apr;44(4):421-8
Date
Apr-2010
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Age Factors
Aged
Aged, 80 and over
Attitude to Death
Child
Child, Preschool
Education, Medical, Undergraduate
Humans
Infant
Middle Aged
Ontario
Physician-Patient Relations
Students, Medical - psychology
Terminal Care - psychology
Young Adult
Abstract
Many medical students feel inadequately prepared to address end-of-life issues, including patient death. This study aimed to examine medical students' first experiences of the deaths of patients in their care.
Final-year medical students at the Schulich School of Medicine & Dentistry, University of Western Ontario were invited to share their first experience of the death of a patient in their care. The students could choose to participate through telephone interviews, focus groups or e-mail. All responses were audiotaped, transcribed verbatim and analysed using a grounded theory approach.
Twenty-nine students reported experiencing the death of a patient in their care. Of these, 20 chose to participate in an interview, five in a focus group and four through e-mail. The issues that emerged were organised under the overlying themes of 'young', 'old' or 'unexpected' deaths and covered seven major themes: (i) preparation; (ii) the death event; (iii) feelings; (iv) the role of the clinical clerk; (v) differential factors between deaths; (vi) closure, and (vii) relationships. These themes generated a five-stage cyclical model of students' experiences of death, consisting of: (i) preparation; (ii) the event itself; (iii) the crisis; (iv) the resolution, and (v) the lessons learned. 'Preparation' touches on personal experience and pre-clinical instruction. 'The event itself' could be categorised as referring to a 'young' patient, an 'old' patient or a patient in whom death was 'unexpected'. In the 'resolution' phase, coping mechanisms included rationalisation, contemplation and learning. The 'lessons learned' shape medical students' experiences of future patient deaths and their professional identity.
A tension between emotional concern and professional detachment was pervasive among medical students undergoing their first experience of the death of a patient in their care. How this tension was negotiated depended on the patient's clinical circumstances, supervisor role-modelling and, most importantly, the support of supervisors and peers, including debriefing opportunities. Faculty members and residents should be made aware of the complexities of a medical student's first experience of patient death and be educated regarding sympathetic debriefing.
Notes
Comment In: Med Educ. 2010 Nov;44(11):115220946514
PubMed ID
20236239 View in PubMed
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The potential for misusing "genetic predisposition" in Canadian courts and tribunals.

https://arctichealth.org/en/permalink/ahliterature134215
Source
CMAJ. 2011 Oct 4;183(14):1601-4
Publication Type
Article
Date
Oct-4-2011
Author
Roxanne Mykitiuk
Mark Pioro
Lilith Finkler
Jeff Nisker
Author Affiliation
Osgoode Hall Law School, York University, Toronto, Ont.
Source
CMAJ. 2011 Oct 4;183(14):1601-4
Date
Oct-4-2011
Language
English
Publication Type
Article
Keywords
Canada
Genetic Predisposition to Disease
Genetic Testing - legislation & jurisprudence
Humans
Jurisprudence
Mental Disorders - genetics
Musculoskeletal Diseases - genetics
Neoplasms - genetics
Nervous System Diseases - genetics
Respiratory Tract Diseases - genetics
Notes
Cites: Lancet. 1991 Jul 13;338(8759):82-31676470
Cites: CMAJ. 1998 May 19;158(10):1309-139614824
Cites: J Health Soc Behav. 2005 Dec;46(4):307-2216433278
Cites: Science. 1989 Sep 8;245(4922):1073-802570460
Cites: Hum Genet. 2010 Mar;127(3):303-1420183929
Cites: CMAJ. 2000 Jun 13;162(12):1697-70010870502
Cites: Nature. 1988 Apr 21;332(6166):734-62895895
Cites: Med Health Care Philos. 2007 Dec;10(4):417-3117705026
PubMed ID
21609997 View in PubMed
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Preimplantation genetic diagnosis in Canada: a survey of Canadian IVF units.

https://arctichealth.org/en/permalink/ahliterature143308
Source
J Obstet Gynaecol Can. 2010 Apr;32(4):341-7
Publication Type
Article
Date
Apr-2010
Author
Kathy N Speechley
Jeff Nisker
Author Affiliation
Department of Paediatrics, Schulich School of Medicine and Dentistry, The University of Western Ontario, London ON.
Source
J Obstet Gynaecol Can. 2010 Apr;32(4):341-7
Date
Apr-2010
Language
English
Publication Type
Article
Keywords
Ambulatory Care Facilities
Canada
Female
Fertilization in Vitro
Hospital Units
Humans
Preimplantation Diagnosis - statistics & numerical data
Questionnaires
Abstract
To determine the current practice patterns of preimplantation genetic diagnosis (PGD) in Canada related to genetic counselling, embryo biopsy, and cytogenetic and molecular analyses.
An Internet survey was constructed and administered following Dillman's tailored design method. The contact information for medical directors of all 28 Canadian IVF units was provided by Assisted Human Reproduction Canada.
Seventeen of the 28 Canadian IVF units responded, 16 of which offered PGD. Of these, 35% performed embryo biopsy on site, 41% transferred embryos for biopsy to another Canadian unit, and 18% transferred embryos to the United States. Both cytogenetic and molecular analysis were performed on site in 24% of responding units, with 24% and 18% respectively performed in another Canadian unit, and 24% and 35% performed in the United States. Of the clinics that do not perform PGD, seven (41%) indicated that they would like to offer PGD but do not have the resources or expertise to make it available. Almost all units indicated that genetic counselling was provided by genetic counsellors or medical geneticists, usually off site.
Because the majority of Canadian units offering PGD send embryos or biopsies to another unit in Canada or the United States, regionalization of PGD services should now be considered. Because 41% of IVF units not offering PGD indicated that they would if they had the resources, and because IVF may soon become publicly funded in several provinces, dramatically increasing the number of people who might seek PGD, many more PGD centres will be necessary.
PubMed ID
20500942 View in PubMed
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Public perceptions of ethical issues regarding adult predictive genetic testing.

https://arctichealth.org/en/permalink/ahliterature152058
Source
Health Care Anal. 2010 Jun;18(2):103-12
Publication Type
Article
Date
Jun-2010
Author
Douglas K Martin
Heather L Greenwood
Jeff Nisker
Author Affiliation
Department of Health Policy, Management and Evaluation and the Joint Centre for Bioethics, University of Toronto, 88 College St., Toronto, ON, M5G 1L4, Canada. douglas.martin@utoronto.ca
Source
Health Care Anal. 2010 Jun;18(2):103-12
Date
Jun-2010
Language
English
Publication Type
Article
Keywords
Adult
Attitude to Health
Canada
Disclosure
Drama
Genetic Counseling
Genetic Predisposition to Disease
Genetic Testing - ethics
Health education
Humans
Public Opinion
Qualitative Research
Abstract
The purpose of this study was to explore the views of members of the general public regarding ethical issues in adult predictive genetic testing. The literature pertaining to ethical issues regarding to adult predictive genetic testing is largely restricted to the views of 'experts' who have emphasized informed consent, patent issues, and insurance discrimination. Occasionally the views of patients who have undergone genetic counselling and testing have been elicited, adding psychosocial and family issues. However, the general public has not had the opportunity to contribute. In order to explore theatre as a health policy research tool, 1,200 audience members attended the play 'Sarah's Daughters' in seven Canadian cities, following which audience discussions were audiotaped. This study performed a secondary qualitative analysis of the data to identify the ethical issues of adult predictive genetic testing important to members of the general public. The identified issues were: (1) need for public education; (2) choice to undergo genetic counselling and testing; (3) access to genetic counselling and testing; and (4) obligations regarding the handling of genetic information. Audience members emphasized public education and access to information regarding potential choices, which was different from the emphasis on informed consent and other ethical issues prominent in the literature. Members of the general public emphasized ethical issues that were different than those identified by experts and patients. It is essential that members of the public be included in complex and controversial public policy decisions.
PubMed ID
19288201 View in PubMed
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16 records – page 1 of 2.