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Achieving closure through disclosure: experience in a pediatric institution.

https://arctichealth.org/en/permalink/ahliterature180246
Source
J Pediatr. 2004 May;144(5):559-60
Publication Type
Article
Date
May-2004

Bad news about bad news: the disclosure of risks to insurability in research consent processes.

https://arctichealth.org/en/permalink/ahliterature137392
Source
Account Res. 2011 Jan;18(1):31-44
Publication Type
Article
Date
Jan-2011
Author
Victoria Smith Apold
Jocelyn Downie
Author Affiliation
Faculties of Law and Medicine, Dalhousie University, Halifax, Nova Scotia, Canada.
Source
Account Res. 2011 Jan;18(1):31-44
Date
Jan-2011
Language
English
Publication Type
Article
Keywords
Canada
Ethics, Research
Humans
Incidental Findings
Informed Consent - ethics - legislation & jurisprudence
Insurance Coverage - ethics - legislation & jurisprudence
Insurance Selection Bias
Insurance, Life - ethics - legislation & jurisprudence
Research Subjects
Risk
Truth Disclosure - ethics
Abstract
One of the phenomena associated with research is "incidental findings," that is, unexpected findings made during the research, and outside the scope of the research, which have potential health importance. One underappreciated risk of incidental findings is the potential loss of the research subject's insurability; or if a research subject fails to disclose incidental findings when applying for insurance, the insurance contract may be voidable by the insurer. In this article, we seek to explain the insurability risks associated with incidental findings and to make recommendations for how researchers and research ethics committees should address the issue of disclosure of these risks.
PubMed ID
21287413 View in PubMed
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Clinical ethics, information, and communication: review of 31 cases from a clinical ethics committee.

https://arctichealth.org/en/permalink/ahliterature29928
Source
J Med Ethics. 2005 Feb;31(2):73-7
Publication Type
Article
Date
Feb-2005
Author
R. Førde
I H Vandvik
Author Affiliation
Legeforeningens forskningsinstitutt, Postboks 1152, Sentrum, 0107 Oslo, Norway. reidun.forde@legeforeningen.no
Source
J Med Ethics. 2005 Feb;31(2):73-7
Date
Feb-2005
Language
English
Publication Type
Article
Keywords
Adult
Child
Ethics Committees, Clinical
Ethics, Clinical
Female
Hospitals - ethics
Humans
Infant
Infant, Newborn
Male
Middle Aged
Norway
Pediatrics - ethics
Physician-Patient Relations - ethics
Truth Disclosure - ethics
Withholding Treatment - ethics
Abstract
OBJECTIVES: To summarise the types of case brought to the Clinical Ethics Committee of the National Hospital of Norway from 1996 to 2002 and to describe and discuss to what extent issues of information/communication have been involved in the ethical problems. DESIGN: Systematic review of case reports. FINDINGS: Of the 31 case discussions, (20 prospective, 11 retrospective), 19 cases concerned treatment of children. Twenty cases concerned ethical problems related to withholding/withdrawing of treatment. In 25 cases aspects of information/communication were involved in the ethical problem, either explicitly (n = 3) or implicitly (n = 22). CONCLUSION: Problems related to information/communication may underlie a classic ethical problem. Identification of these "hidden" problems may be important for the analysis, and hence, the solution to the ethical dilemma.
PubMed ID
15681669 View in PubMed
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Clinical obligations and public health programmes: healthcare provider reasoning about managing the incidental results of newborn screening.

https://arctichealth.org/en/permalink/ahliterature148259
Source
J Med Ethics. 2009 Oct;35(10):626-34
Publication Type
Article
Date
Oct-2009
Author
F A Miller
R Z Hayeems
Y. Bombard
J. Little
J C Carroll
B. Wilson
J. Allanson
M. Paynter
J P Bytautas
R. Christensen
P. Chakraborty
Author Affiliation
Department of Health Policy, Management and Evaluation, University of Toronto, Ontario, Canada. fiona.miller@utoronto.ca
Source
J Med Ethics. 2009 Oct;35(10):626-34
Date
Oct-2009
Language
English
Publication Type
Article
Keywords
Anemia, Sickle Cell - diagnosis - genetics
Attitude of Health Personnel
Carrier state
Cross-Sectional Studies
Genetic Counseling - ethics
Genetic Testing
Humans
Incidental Findings
Infant, Newborn
Neonatal Screening - ethics
Ontario
Parents - education
Questionnaires
Truth Disclosure - ethics
Abstract
Expanded newborn screening generates incidental results, notably carrier results. Yet newborn screening programmes typically restrict parental choice regarding receipt of this non-health serving genetic information. Healthcare providers play a key role in educating families or caring for screened infants and have strong beliefs about the management of incidental results.
To inform policy on disclosure of infant sickle cell disorder (SCD) carrier results, a mixed-methods study of healthcare providers was conducted in Ontario, Canada, to understand attitudes regarding result management using a cross-sectional survey (N = 1615) and semistructured interviews (N = 42).
Agreement to reasons favouring disclosure of SCD carrier results was high (65.1%-92.7%) and to reasons opposing disclosure was low (4.1%-18.1%). Genetics professionals expressed less support for arguments favouring disclosure (35.3%-78.8%), and more agreement with arguments opposing disclosure (15.7%-51.9%). A slim majority of genetics professionals (51.9%) agreed that a reason to avoid disclosure was the importance of allowing the child to decide to receive results. Qualitatively, there was a perceived "duty" to disclose, that if the clinician possessed the information, the clinician could not withhold it.
While a majority of respondents perceived a duty to disclose the incidental results of newborn screening, the policy implications of these attitudes are not obvious. In particular, policy must balance descriptive ethics (ie, what providers believe) and normative ethics (ie, what duty-based principles oblige), address dissenting opinion and consider the relevance of moral principles grounded in clinical obligations for public health initiatives.
PubMed ID
19793944 View in PubMed
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Disclosing medical errors to patients: a status report in 2007.

https://arctichealth.org/en/permalink/ahliterature162184
Source
CMAJ. 2007 Jul 31;177(3):265-7
Publication Type
Article
Date
Jul-31-2007
Author
Wendy Levinson
Thomas H Gallagher
Author Affiliation
Department of Medicine, University of Toronto, Toronto, Ont. wendy.levinson@utoronto.ca
Source
CMAJ. 2007 Jul 31;177(3):265-7
Date
Jul-31-2007
Language
English
Publication Type
Article
Keywords
Canada
Humans
Insurance, Liability - legislation & jurisprudence
Malpractice - legislation & jurisprudence
Medical Errors - ethics - legislation & jurisprudence
Organizational Innovation
Physician's Practice Patterns - ethics - legislation & jurisprudence - organization & administration
Physician-Patient Relations - ethics
Societies, Medical
Truth Disclosure - ethics
Notes
Cites: N Engl J Med. 2002 Dec 12;347(24):1933-4012477944
Cites: CMAJ. 2001 Feb 20;164(4):509-1311233873
Cites: N Engl J Med. 2003 Jun 5;348(23):2281-412788991
Cites: CMAJ. 2004 May 25;170(11):1678-8615159366
Cites: Queens Law J. 2002 Fall;28(1):353-6215162816
Cites: N Engl J Med. 1991 Jan 10;324(2):89-931984189
Cites: N Engl J Med. 1991 Feb 7;324(6):377-841824793
Cites: J R Soc Med. 2005 Jul;98(7):307-915994590
Cites: Arch Intern Med. 2005 Sep 12;165(16):1819-2416157824
Cites: Surgery. 2005 Nov;138(5):851-816291385
Cites: N Engl J Med. 2006 May 25;354(21):2205-816723612
Cites: Arch Intern Med. 2006 Aug 14-28;166(15):1585-9316908791
Cites: Arch Intern Med. 2006 Aug 14-28;166(15):1605-1116908793
Cites: CMAJ. 2006 Oct 10;175(8):889-9417030939
Cites: Health Aff (Millwood). 2005 Jul-Dec;Suppl Web Exclusives:W5-509-2516269444
Cites: N Engl J Med. 2007 Jun 28;356(26):2713-917596606
Cites: JAMA. 2003 Feb 26;289(8):1001-712597752
Cites: Ann Intern Med. 1999 Dec 21;131(12):963-710610649
Comment In: CMAJ. 2007 Nov 6;177(10):123617984478
PubMed ID
17664451 View in PubMed
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Disclosure of medical error to parents and paediatric patients: assessment of parents' attitudes and influencing factors.

https://arctichealth.org/en/permalink/ahliterature147065
Source
Arch Dis Child. 2010 Apr;95(4):286-90
Publication Type
Article
Date
Apr-2010
Author
A G Matlow
L. Moody
R. Laxer
P. Stevens
C. Goia
J N Friedman
Author Affiliation
Department of Pediatrics, The Hospital for Sick Children, Toronto, Canada. anne.matlow@sickkids.ca
Source
Arch Dis Child. 2010 Apr;95(4):286-90
Date
Apr-2010
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Attitude to Health - ethnology
Child
Child, Preschool
Ethics, Medical
Female
Humans
Male
Medical Errors - ethics - psychology
Middle Aged
Ontario
Parents - psychology
Patient Rights - ethics
Pediatrics - ethics
Prospective Studies
Severity of Illness Index
Truth Disclosure - ethics
Young Adult
Abstract
To assess parental preferences for medical error disclosure and evaluate associated factors.
Prospective survey.
Hospital for Sick Children, Toronto, Canada.
Parents of inpatients and outpatients.
Anonymous questionnaire administered on May to August 2006, surveying demographic characteristics and identifying parents' thresholds for disclosure using a vignette with six levels of harm.
Preferred thresholds for parent and patient disclosure and associated factors.
99% of 431 parents (181 inpatients, 250 outpatients) wanted disclosure if there was potential or actual harm versus 77% if there was none (por= 11 years (p
PubMed ID
19948514 View in PubMed
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Ethical challenges in surgery as narrated by practicing surgeons.

https://arctichealth.org/en/permalink/ahliterature175994
Source
BMC Med Ethics. 2005 Feb 28;6:E2
Publication Type
Article
Date
Feb-28-2005
Author
Kirsti Torjuul
Ann Nordam
Venke Sørlie
Author Affiliation
Sør-Trøndelag University College, Faculty of Nursing, Trondheim, Norway. kirsti.torjuul@hist.no.
Source
BMC Med Ethics. 2005 Feb 28;6:E2
Date
Feb-28-2005
Language
English
Publication Type
Article
Keywords
Attitude of Health Personnel
Communication
Ethics, Medical
General Surgery - ethics
Health Knowledge, Attitudes, Practice
Humans
Interpersonal Relations
Interviews as Topic
Norway
Patient care team
Physician-Patient Relations
Physicians - psychology
Truth Disclosure - ethics
Uncertainty
Abstract
The aim of this study was to explore the ethical challenges in surgery from the surgeons' point of view and their experience of being in ethically difficult situations.
Five male and five female surgeons at a university hospital in Norway were interviewed as part of a comprehensive investigation into the narratives of nurses and physicians about being in such situations. The transcribed interview texts were subjected to a phenomenological-hermeneutic interpretation.
No differences in ethical reasoning between male and female surgeons were found. They reasoned in both action and relational ethical perspectives. Surgeons focused on their relationships with patients and colleagues and their moral self in descriptions of the ethical challenges in their work. Dialogue and personal involvement were important in their relationships with patients. The surgeons emphasized the importance of open dialogue, professional recognition, and an inclusive and accepting environment between colleagues.
The surgeons are personally challenged by the existential realities of human life in their relationships with patients. They realized that ethical challenges are an inherent part of performing surgery and of life itself, and say that they have to learn to "live with" these challenges in a way that is confirmed both socially and by their inner moral self. This means accepting their personal and professional limitations, being uncertain, being fallible, and being humble. Living with the ethical challenges of surgery seems to contribute to the surgeons' confidence and vulnerability in their professional identity.
Notes
Cites: Am J Surg. 1997 Dec;174(6):589-919409578
Cites: Arch Surg. 2000 Jan;135(1):22-510636342
Cites: Soc Sci Med. 2001 Jan;52(2):171-311144772
Cites: Soc Sci Med. 2001 Jan;52(2):203-1311144776
Cites: Soc Sci Med. 2001 Jan;52(2):239-4811144780
Cites: Tidsskr Nor Laegeforen. 2001 Feb 10;121(4):495-711255871
Cites: Soc Sci Med. 2001 Jun;52(11):1719-2711327143
Cites: BMJ. 2001 May 5;322(7294):1073-411337419
Cites: Br J Surg. 2001 Jun;88(6):769-7011412244
Cites: Soc Sci Med. 2001 Sep;53(5):657-6711478544
Cites: J Am Coll Surg. 2002 Mar;194(3):352-6611893137
Cites: BMJ. 2002 Mar 16;324(7338):624-511895808
Cites: BMJ. 2002 Apr 6;324(7341):835-811934779
Cites: BMJ. 2002 Apr 13;324(7342):859-6011950716
Cites: Soc Sci Med. 2002 Apr;54(7):1011-2311999499
Cites: Nurs Ethics. 2002 Nov;9(6):623-3512449999
Cites: Nurs Ethics. 2003 Jul;10(4):388-40312875536
Cites: Scand J Caring Sci. 2003 Sep;17(3):285-9212919464
Cites: Soc Sci Med. 2004 Mar;58(6):1075-8414723903
Cites: Soc Sci Med. 2004 May;58(9):1635-4514990366
Cites: J Med Ethics. 2004 Apr;30(2):160-515082810
Cites: Soc Sci Med. 2004 Jul;59(1):47-5515087142
Cites: Scand J Caring Sci. 2004 Jun;18(2):145-5315147477
Cites: J Med Educ. 1985 Oct;60(10):804-64045978
Cites: J Adv Nurs. 1992 Sep;17(9):1028-341401543
Cites: J Adv Nurs. 1993 Dec;18(12):2008-148132934
Cites: J Adv Nurs. 1994 Aug;20(2):245-507930141
Cites: Scand J Caring Sci. 1995;9(4):245-538578046
Cites: Theor Med. 1996 Sep;17(3):189-2078952417
Cites: Arch Surg. 2000 Jan;135(1):46-5010636346
Cites: Nurs Ethics. 2000 Jan;7(1):47-6210703423
PubMed ID
15737235 View in PubMed
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Ethical issues after the disclosure of a terminal illness: Danish and Norwegian hospice nurses' reflections.

https://arctichealth.org/en/permalink/ahliterature71394
Source
Nurs Ethics. 2003 Mar;10(2):175-85
Publication Type
Article
Date
Mar-2003
Author
Margarethe Lorensen
Anne J Davis
Emiko Konishi
Eli H Bunch
Author Affiliation
Institute for Nursing Science, University of Oslo, Blindern, Norway. margarethe.lorensen@sykepleievit.uio.no
Source
Nurs Ethics. 2003 Mar;10(2):175-85
Date
Mar-2003
Language
English
Publication Type
Article
Keywords
Adult
Attitude of Health Personnel
Denmark
Empathy
Ethics, Nursing
Family - psychology
Female
Hospice Care - ethics - legislation & jurisprudence - psychology
Humans
Middle Aged
Norway
Nurse-Patient Relations
Nursing Methodology Research
Nursing Staff - psychology
Patient Rights - legislation & jurisprudence
Personal Autonomy
Principle-Based Ethics
Questionnaires
Truth Disclosure - ethics
Abstract
This research explored the ethical issues that nurses reported in the process of elaboration and further disclosure after an initial diagnosis of a terminal illness had been given. One hundred and six hospice nurses in Norway and Denmark completed a questionnaire containing 45 items of forced-choice and open-ended questions. This questionnaire was tested and used in three countries prior to this study; for this research it was tested on Danish and Norwegian nurses. All respondents supported the ethics of ongoing disclosure to terminally ill patients based on ethical principles embedded in their country's Patients' Rights Acts. Truth, as an intrinsic value, proved foundational to patient autonomy, the most frequent ethical principle these nurses reported to justify their ethical position on information disclosure to terminally ill people. Telling the truth about a diagnosis was not the end of ethics in hospice care, but rather the beginning because what occurs ethically in dealing with prognosis issues became central to these hospice nurses, the patients and their families. Coupled with truth-telling, compassionate interaction and care become extensions of patients' rights.
PubMed ID
12659488 View in PubMed
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Familial hypercholesterolemia: ethical, practical and psychological problems from the perspective of patients.

https://arctichealth.org/en/permalink/ahliterature70696
Source
Patient Educ Couns. 2005 May;57(2):162-7
Publication Type
Article
Date
May-2005
Author
Anders Agård
Ingrid Agren Bolmsjö
Göran Hermerén
Jan Wahlstöm
Author Affiliation
Department of Medicine, Sahlgren's University Hospital, SE-41345 Göteborg, Sweden. s.agard@vgregion.se
Source
Patient Educ Couns. 2005 May;57(2):162-7
Date
May-2005
Language
English
Publication Type
Article
Keywords
Adaptation, Psychological
Adult
Affect
Aged
Attitude to Health
Cost of Illness
Family - psychology
Fear
Female
Guilt
Health Knowledge, Attitudes, Practice
Heterozygote Detection
Hospitals, University
Humans
Hypercholesterolemia, Familial - genetics - prevention & control - psychology
Life Style
Male
Middle Aged
Nursing Methodology Research
Qualitative Research
Quality of Life
Questionnaires
Research Support, Non-U.S. Gov't
Stress, Psychological - psychology
Sweden
Truth Disclosure - ethics
Abstract
The main aim of the study was to explore the extent to which familial hypercholesterolemia (FH) influences the life of the patients affected. The study employed a qualitative analysis of semi-structured interviews with 23 outpatients who were being treated following a diagnosis of heterozygous FH at a tertiary hospital in Göteborg, Sweden. Some interviewees reported concerns related to their medication and feelings of guilt when not complying with treatment recommendations. However, none of the respondents expressed sustained emotional distress or would have preferred to be ignorant of their diagnosis. Apart from being more observant about food intake, their awareness of FH did not appear to have had a substantial impact on their way of life. In fact, those who did not suffer from any other diseases generally regarded themselves as healthy. Discussing the genetic constitution with family members with whom they had close contact was natural, but informing distant family members was not.
PubMed ID
15911189 View in PubMed
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Handling ethical, legal and social issues in birth cohort studies involving genetic research: responses from studies in six countries.

https://arctichealth.org/en/permalink/ahliterature97606
Source
BMC Med Ethics. 2010;11(1):4
Publication Type
Article
Date
2010
Author
Nola M Ries
Jane LeGrandeur
Timothy Caulfield
Author Affiliation
Health Law Institute, Law Centre, University of Alberta, Edmonton, T6G 2H5, Canada.
Source
BMC Med Ethics. 2010;11(1):4
Date
2010
Language
English
Publication Type
Article
Keywords
Adolescent
Canada
Child
Child Abuse
Child, Preschool
Cohort Studies
Confidentiality
Ethics, Research
Europe
Genetic Research - ethics - legislation & jurisprudence
Health Knowledge, Attitudes, Practice
Humans
Informed Consent - ethics - legislation & jurisprudence
Mandatory Reporting - ethics
Minors
Parental Consent - ethics - legislation & jurisprudence
Questionnaires
Research Subjects - economics - legislation & jurisprudence
Social Environment
Telephone
Tissue Banks - ethics - legislation & jurisprudence
Truth Disclosure - ethics
United States
Abstract
BACKGROUND: Research involving minors has been the subject of much ethical debate. The growing number of longitudinal, pediatric studies that involve genetic research present even more complex challenges to ensure appropriate protection of children and families as research participants. Long-term studies with a genetic component involve collection, retention and use of biological samples and personal information over many years. Cohort studies may be established to study specific conditions (e.g. autism, asthma) or may have a broad aim to research a range of factors that influence the health and development of children. Studies are increasingly intended to serve as research platforms by providing access to data and biological samples to researchers over many years.This study examines how six birth cohort studies in North America and Europe that involve genetic research handle key ethical, legal and social (ELS) issues: recruitment, especially parental authority to include a child in research; initial parental consent and subsequent assent and/or consent from the maturing child; withdrawal; confidentiality and sample/data protection; handling sensitive information; and disclosure of results. METHODS: Semi-structured telephone interviews were carried out in 2008/09 with investigators involved in six birth cohort studies in Canada, Denmark, England, France, the Netherlands and the United States. Interviewees self-identified as being knowledgeable about ELS aspects of the study. Interviews were conducted in English. RESULTS: The studies vary in breadth of initial consent, but none adopt a blanket consent for future use of samples/data. Ethics review of new studies is a common requirement. Studies that follow children past early childhood recognise a need to seek assent/consent as the child matures. All studies limit access to identifiable data and advise participants of the right to withdraw. The clearest differences among studies concern handling of sensitive information and return of results. In all studies, signs of child abuse require reports to authorities, but this disclosure duty is not always stated in consent materials. Studies vary in whether they will return to participants results of routine tests/measures, but none inform participants about findings with unknown clinical significance. CONCLUSIONS: Analysis of how cohort studies in various jurisdictions handle key ELS issues provides informative data for comparison and contrast. Consideration of these and other examples and further scholarly exploration of ELS issues provides insight on how best to address these aspects in ways that respect the well-being of participants, especially children who become research subjects at the start of their lives.
PubMed ID
20331891 View in PubMed
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25 records – page 1 of 3.