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Article ; Online: Beyond Sterilization: A Comprehensive Review on the Safety and Efficacy of Opportunistic Salpingectomy as a Preventative Strategy for Ovarian Cancer.

Zadabedini Masouleh, Tahereh / Etchegary, Holly / Hodgkinson, Kathleen / Wilson, Brenda J / Dawson, Lesa

2023 Volume 30, Issue 12, Page(s) 10152–10165

Abstract: Ovarian cancer (OC) is Canada's third most common gynecological cancer, with an estimated 3000 new cases and 1950 deaths projected in 2022. No effective screening has been found to identify OC, especially the most common subtype, high-grade serous ... ...

Abstract	Ovarian cancer (OC) is Canada's third most common gynecological cancer, with an estimated 3000 new cases and 1950 deaths projected in 2022. No effective screening has been found to identify OC, especially the most common subtype, high-grade serous carcinoma (HGSC), at an earlier, curable stage. In patients with hereditary predispositions such as
MeSH term(s)	Humans ; Female ; Ovarian Neoplasms/genetics ; Ovarian Neoplasms/prevention & control ; Ovarian Neoplasms/pathology ; Salpingectomy/adverse effects ; Hysterectomy ; Fallopian Tubes/pathology ; Sterilization
Language	English
Publishing date	2023-11-28
Publishing country	Switzerland
Document type	Journal Article ; Review
ZDB-ID	1236972-x
ISSN	1718-7729 ; 1198-0052
ISSN (online)	1718-7729
ISSN	1198-0052
DOI	10.3390/curroncol30120739
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Zs.A 4305: Show issues

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Article ; Online: The Curious Case of the De-ICD: Negotiating the Dynamics of Autonomy and Paternalism in Complex Clinical Relationships.

Pullman, Daryl / Hodgkinson, Kathleen

The American journal of bioethics : AJOB

2016 Volume 16, Issue 8, Page(s) 3–10

Abstract: This article discusses the response of our ethics consultation service to an exceptional request by a patient to have his implantable cardioverter defibrillator (ICD) removed. Despite assurances that the device had saved his life on at least two ... ...

Abstract	This article discusses the response of our ethics consultation service to an exceptional request by a patient to have his implantable cardioverter defibrillator (ICD) removed. Despite assurances that the device had saved his life on at least two occasions, and cautions that without it he would almost certainly suffer a potentially lethal cardiac event within 2 years, the patient would not be swayed. Although the patient was judged to be competent, our protracted consultation process lasted more than 8 months as we consulted, argued with, and otherwise cajoled him to change his mind, all to no avail. Justifying our at times aggressive paternalistic intervention helped us to reflect on the nature of autonomy and the dynamics of the legal, moral, and personal relationships in the clinical decision-making process.
MeSH term(s)	Decision Making ; Ethics, Medical ; Humans ; Morals ; Negotiating ; Paternalism ; Personal Autonomy
Language	English
Publishing date	2016
Publishing country	United States
Document type	Journal Article
ZDB-ID	2060433-6
ISSN	1536-0075 ; 1526-5161
ISSN (online)	1536-0075
ISSN	1526-5161
DOI	10.1080/15265161.2016.1187211
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Zs.A 6814: Show issues

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Article ; Online: On the Curious Range of Responses to Our Curious Case: Response to Open Peer Commentaries on "The Curious Case of the De-ICD: Negotiating the Dynamics of Autonomy and Paternalism in Complex Clinical Relationships".

Pullman, Daryl / Hodgkinson, Kathleen

The American journal of bioethics : AJOB

2016 Volume 16, Issue 9, Page(s) W4–6

MeSH term(s)	Decision Making ; Humans ; Negotiating ; Paternalism ; Personal Autonomy
Language	English
Publishing date	2016
Publishing country	United States
Document type	Journal Article ; Comment
ZDB-ID	2060433-6
ISSN	1536-0075 ; 1526-5161
ISSN (online)	1536-0075
ISSN	1526-5161
DOI	10.1080/15265161.2016.1196762
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Zs.A 6814: Show issues

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Article ; Online: Psychological Distress and Quality of Life in Participants Undergoing Genetic Testing for Arrhythmogenic Right Ventricular Cardiomyopathy Caused by TMEM43 p.S358L: Is It Time to Offer Population-Based Genetic Screening?

Brothers, Cassidy / Etchegary, Holly / Curtis, Fiona / Simmonds, Charlene / Houston, Jim / Young, Terry-Lynn / Pullman, Daryl / Mariathas, Hensley H / Connors, Sean / Hodgkinson, Kathleen

Public health genomics

2021 Volume 24, Issue 5-6, Page(s) 253–260

Abstract: Purpose: We have identified 27 families in Newfoundland and Labrador (NL) with the founder variant TMEM43 p.S358L responsible for 1 form of arrhythmogenic right ventricular cardiomyopathy. Current screening guidelines rely solely on cascade genetic ... ...

Abstract	Purpose: We have identified 27 families in Newfoundland and Labrador (NL) with the founder variant TMEM43 p.S358L responsible for 1 form of arrhythmogenic right ventricular cardiomyopathy. Current screening guidelines rely solely on cascade genetic screening, which may result in unrecognized, high-risk carriers who would benefit from preemptive implantable cardioverter-defibrillator therapy. This pilot study explored the acceptability among subjects to TMEM43 p.S358L population-based genetic screening (PBGS) in this Canadian province. Methods: A prospective cohort study assessed attitudes, psychological distress, and health-related quality of life (QOL) in unselected individuals who underwent genetic screening for the TMEM43 p.S358L variant. Participants (n = 73) were recruited via advertisements and completed 2 surveys at baseline, 6 months, and 1 year which measured health-related QOL (SF-36v2) and psychological distress (Impact of Events Scale). Results: No variant-positive carriers were identified. Of those screened through a telephone questionnaire, >95% felt positive about population-genetic screening for TMEM43 p.S358L, though 68% reported some degree of anxiety after seeing the advertisement. There were no significant changes in health-related QOL or psychological distress scores over the study period. Conclusion: Despite some initial anxiety, we show support for PBGS among research subjects who screened negative for the TMEM43 p.S358L variant in NL. These findings have implications for future PBGS programs in the province.
MeSH term(s)	Arrhythmogenic Right Ventricular Dysplasia/diagnosis ; Arrhythmogenic Right Ventricular Dysplasia/genetics ; Canada ; Genetic Testing ; Humans ; Membrane Proteins/genetics ; Pilot Projects ; Prospective Studies ; Psychological Distress ; Quality of Life
Chemical Substances	Membrane Proteins ; TMEM43 protein, human
Language	English
Publishing date	2021-09-09
Publishing country	Switzerland
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2457023-0
ISSN	1662-8063 ; 1662-4246
ISSN (online)	1662-8063
ISSN	1662-4246
DOI	10.1159/000517265
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Zs.A 4908: Show issues

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Article ; Online: Exercise and arrhythmic risk in TMEM43 p.S358L arrhythmogenic right ventricular cardiomyopathy.

Paulin, Frédéric L / Hodgkinson, Kathleen A / MacLaughlan, Sarah / Stuckless, Susan N / Templeton, Christina / Shah, Suryakant / Bremner, Heather / Roberts, Jason D / Young, Terry-Lynn / Parfrey, Patrick S / Connors, Sean P

Heart rhythm

2020 Volume 17, Issue 7, Page(s) 1159–1166

Abstract: Background: High-level exercise has been associated with a malignant phenotype in desmosomal and genotype-negative forms of arrhythmogenic right ventricular cardiomyopathy (ARVC). This is the first study to examine this issue with ARVC secondary to the ... ...

Abstract	Background: High-level exercise has been associated with a malignant phenotype in desmosomal and genotype-negative forms of arrhythmogenic right ventricular cardiomyopathy (ARVC). This is the first study to examine this issue with ARVC secondary to the TMEM43 p.S358L mutation. Objective: The purpose of this study was to evaluate the impact of exercise on arrhythmic risk and cardiac death in TMEM43 p.S358L ARVC. Methods: Individuals with the TMEM43 p.S358L mutation enrolled in a prospective registry who had received a primary prevention implantable cardioverter-defibrillator (ICD) were invited to complete the modified Paffenbarger Physical Activity Questionnaire to assess their physical activity in the year before their ICD implantation. Time-to-event analyses using unadjusted and adjusted Cox proportional hazards models evaluated associations between physical activity and first appropriate ICD discharge secondary to malignant ventricular arrhythmia or cardiac death. Results: In 80 subjects with the TMEM43 p.S358L mutation, exercise ≥9.0 metabolic equivalent of task (MET)-hours/day (high level) in the year before ICD implantation was associated with an adjusted 9.1-fold increased hazard of first appropriate ICD discharge (there were no deaths) relative to physical activity <9.0 MET-hours/day (moderate level) (95% confidence interval [CI] 3.3-24.6 MET-hours/day; P < .001). The median age from birth to first appropriate ICD discharge was 58.5 years (95% CI 56.5-60.5 years) vs 35.8 years (95% CI 28.2-43.4 years) (P < .001) in subjects in moderate- and high-level exercise groups, respectively. Conclusion: Exercise ≥9.0 MET-hours/day is associated with an increased risk of malignant ventricular arrhythmias in the TMEM43 p.S358L subtype of ARVC. Extrapolating these data, we suggest molecular testing be offered in early childhood to inform exercise choices reflective of the genotype.
MeSH term(s)	Adult ; Arrhythmogenic Right Ventricular Dysplasia/genetics ; Arrhythmogenic Right Ventricular Dysplasia/physiopathology ; Arrhythmogenic Right Ventricular Dysplasia/prevention & control ; DNA/genetics ; DNA Mutational Analysis ; Exercise/physiology ; Female ; Humans ; Male ; Membrane Proteins/genetics ; Membrane Proteins/metabolism ; Mutation ; Phenotype ; Primary Prevention/methods ; Prospective Studies ; Risk Factors
Chemical Substances	Membrane Proteins ; TMEM43 protein, human ; DNA (9007-49-2)
Language	English
Publishing date	2020-02-29
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2229357-7
ISSN	1556-3871 ; 1547-5271
ISSN (online)	1556-3871
ISSN	1547-5271
DOI	10.1016/j.hrthm.2020.02.028
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Zs.A 6278: Show issues

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Article ; Online: All-cause mortality and survival in adults with 22q11.2 deletion syndrome.

Van, Lily / Heung, Tracy / Graffi, Justin / Ng, Enoch / Malecki, Sarah / Van Mil, Spencer / Boot, Erik / Corral, Maria / Chow, Eva W C / Hodgkinson, Kathleen A / Silversides, Candice / Bassett, Anne S

Genetics in medicine : official journal of the American College of Medical Genetics

2019 Volume 21, Issue 10, Page(s) 2328–2335

Abstract: Purpose: Given limited data available on long-term outcomes in 22q11.2 deletion syndrome (22q11.2DS), we investigated mortality risk in adults with this microdeletion syndrome.: Methods: We studied 309 well-characterized adults (age ≥17 years) with ... ...

Abstract	Purpose: Given limited data available on long-term outcomes in 22q11.2 deletion syndrome (22q11.2DS), we investigated mortality risk in adults with this microdeletion syndrome. Methods: We studied 309 well-characterized adults (age ≥17 years) with 22q11.2DS and their 1014 unaffected parents and siblings, using a prospective case-control design. We used Cox proportional hazards regression modeling and Kaplan-Meier curves to investigate effects of the 22q11.2 deletion and its associated features on all-cause mortality and survival. Results: The 22q11.2 deletion (hazard ratio [HR] 8.86, 95% CI 2.87-27.37) and major congenital heart disease (CHD; HR 5.03, 95% CI 2.27-11.17), but not intellectual disability or psychotic illness, were significant independent predictors of mortality for adults with 22q11.2DS compared with their siblings. Amongst those with 22q11.2DS, there were 31 deaths that occurred at a median age of 46.4 (range 18.1-68.6) years; a substantial minority had outlived both parents. Probability of survival to age 45 years was approximately 72% for those with major CHD, and 95% for those with no major CHD (p < 0.0001). Conclusion: For adults with 22q11.2DS, the 22q11.2 deletion and more severe forms of CHD both contribute to a lower life expectancy than family-based expectations. The results have implications for genetic counseling and anticipatory care.
MeSH term(s)	Adolescent ; Adult ; Aged ; Case-Control Studies ; Chromosome Deletion ; Chromosomes, Human, Pair 22/genetics ; DiGeorge Syndrome/genetics ; DiGeorge Syndrome/mortality ; Female ; Genetic Counseling ; Heart Defects, Congenital/genetics ; Humans ; Intellectual Disability/genetics ; Male ; Middle Aged ; Prospective Studies
Language	English
Publishing date	2019-04-05
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	1455352-1
ISSN	1530-0366 ; 1098-3600
ISSN (online)	1530-0366
ISSN	1098-3600
DOI	10.1038/s41436-019-0509-y
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Zs.A 5059: Show issues

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Article ; Online: Elucidating the diagnostic odyssey of 22q11.2 deletion syndrome.

Palmer, Lisa D / Butcher, Nancy J / Boot, Erik / Hodgkinson, Kathleen A / Heung, Tracy / Chow, Eva W C / Guna, Alina / Crowley, T Blaine / Zackai, Elaine / McDonald-McGinn, Donna M / Bassett, Anne S

American journal of medical genetics. Part A

2018 Volume 176, Issue 4, Page(s) 936–944

Abstract: Clinical molecular testing has been available for 22q11.2 deletion syndrome (22q11.2DS) for over two decades yet under-recognition and diagnostic delays are common. To characterize the "diagnostic odyssey" in 22q11.2DS we studied 202 well-characterized ... ...

Abstract	Clinical molecular testing has been available for 22q11.2 deletion syndrome (22q11.2DS) for over two decades yet under-recognition and diagnostic delays are common. To characterize the "diagnostic odyssey" in 22q11.2DS we studied 202 well-characterized unrelated adults, none ascertained through an affected relative. We used a regression model to identify clinical and demographic factors associated with length of time to molecular diagnosis. Kaplan-Meier analysis compared time to diagnosis for the molecular testing era (since 1994) and earlier birth cohorts. The results showed that the median time to molecular diagnosis of the 22q11.2 deletion was 4.7 (range 0-20.7) years. Palatal and cardiac anomalies, but not developmental delay/intellectual disability, were associated with a shorter time to molecular diagnosis. Non-European ethnicity was associated with longer time to diagnosis. Inclusion of a cohort from another 22q11.2DS center increased power to observe a significantly earlier diagnosis for patients born in the molecular testing era. Nonetheless, only a minority were diagnosed in the first year of life. On average, patients were seen in seven (range 2-15) different clinical specialty areas prior to molecular diagnosis. The findings indicate that even for those born in the molecular testing era, individuals with 22q11.2DS and their families face a diagnostic odyssey that is often prolonged, particularly in the absence of typical physical congenital features or for those of non-European ancestry. The results support educational efforts to improve clinical recognition and testing, and ultimately newborn screening as a means of maximizing early detection that would provide the best opportunity to optimize outcomes.
MeSH term(s)	Adolescent ; Adult ; Child ; Child, Preschool ; Chromosome Deletion ; DiGeorge Syndrome/diagnosis ; DiGeorge Syndrome/genetics ; DiGeorge Syndrome/mortality ; Female ; Genetic Testing ; Humans ; Infant ; Infant, Newborn ; Kaplan-Meier Estimate ; Male ; Middle Aged ; Phenotype ; Young Adult
Language	English
Publishing date	2018-03-24
Publishing country	United States
Document type	Journal Article ; Research Support, N.I.H., Extramural ; Research Support, Non-U.S. Gov't
ZDB-ID	2108614-X
ISSN	1552-4833 ; 0148-7299 ; 1552-4825
ISSN (online)	1552-4833
ISSN	0148-7299 ; 1552-4825
DOI	10.1002/ajmg.a.38645
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Zs.A 1376/A: Show issues

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Article ; Online: Interest in newborn genetic testing: a survey of prospective parents and the general public.

Etchegary, Holly / Dicks, Elizabeth / Green, Jane / Hodgkinson, Kathleen / Pullman, Daryl / Parfrey, Patrick

Genetic testing and molecular biomarkers

2012 Volume 16, Issue 5, Page(s) 353–358

Abstract: Purpose: Newborn screening (NBS) panels continue to expand, yet there are too few data on public attitudes toward testing in the newborn period to indicate whether there is support for such testing. We measured interest in newborn testing for several ... ...

Abstract	Purpose: Newborn screening (NBS) panels continue to expand, yet there are too few data on public attitudes toward testing in the newborn period to indicate whether there is support for such testing. We measured interest in newborn testing for several autosomal recessive disorders and reasons for interest. Methods: A cross-sectional, pen and paper survey was administered to the general public and prospective parents attending prenatal classes in Eastern Canada between April and December, 2010. Results: A total of 648 individuals completed surveys. Interest in newborn testing for inherited hearing loss, vision loss, and neurological disorders was high (over 80% would have their newborn tested). The attitudes of prospective parents and students were positive, but somewhat less so than members of the general public. Across all disorders, interest in testing was driven by the desire to be prepared for the birth of a child with a genetic disorder. Significantly more people would use the information from testing for fatal neurological disorders in future reproductive decisions than the information generated by newborn testing for inherited hearing or vision loss. Conclusion: Interest is high in newborn testing for a variety of conditions, including those for which no effective treatment exists. Findings lend support to the expansion of NBS panels to include those disorders currently lacking treatment and highlight the value of including the views of diverse stakeholders, including prospective parents, in screening policies.
MeSH term(s)	Adult ; Attitude to Health ; Canada ; Cross-Sectional Studies ; Eye Diseases/diagnosis ; Eye Diseases/genetics ; Genetic Testing ; Hearing Loss/diagnosis ; Hearing Loss/genetics ; Humans ; Infant, Newborn ; Neonatal Screening/psychology ; Nervous System Diseases/diagnosis ; Nervous System Diseases/genetics ; Parents/psychology ; Surveys and Questionnaires
Language	English
Publishing date	2012-05
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2486664-7
ISSN	1945-0257 ; 1945-0265
ISSN (online)	1945-0257
ISSN	1945-0265
DOI	10.1089/gtmb.2011.0221
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Zs.A 5195: Show issues

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Article ; Online: Evaluating genetic counseling for family members of individuals with schizophrenia in the molecular age.

Costain, Gregory / Esplen, Mary Jane / Toner, Brenda / Hodgkinson, Kathleen A / Bassett, Anne S

Schizophrenia bulletin

2012 Volume 40, Issue 1, Page(s) 88–99

Abstract: Background: Myths and concerns about the extent and meaning of genetic risk in schizophrenia may contribute to significant stigma and burden for families. Genetic counseling has long been proposed to be a potentially informative and therapeutic ... ...

Abstract	Background: Myths and concerns about the extent and meaning of genetic risk in schizophrenia may contribute to significant stigma and burden for families. Genetic counseling has long been proposed to be a potentially informative and therapeutic intervention for schizophrenia. Surprisingly, however, available data are limited. We evaluated a contemporary genetic counseling protocol for use in a community mental health-care setting by non-genetics professionals. Methods: We used a pre-post study design with longitudinal follow-up to assess the impact of genetic counseling on family members of individuals with schizophrenia, where molecular testing had revealed no known clinically relevant genetic risk variant. We assessed the outcome using multiple measures, including standard items and scales used to evaluate genetic counseling for other complex diseases. Results: Of the 122 family members approached, 78 (63.9%) actively expressed an interest in the study. Participants (n = 52) on average overestimated the risk of familial recurrence at baseline, and demonstrated a significant improvement in this estimate postintervention (P < .0001). This change was associated with an enduring decrease in concern about recurrence (P = .0003). Significant and lasting benefits were observed in other key areas, including increased knowledge (P < .0001) and a decreased sense of stigma (P = .0047). Endorsement of the need for genetic counseling was high (96.1%). Conclusions: These results provide initial evidence of the efficacy of schizophrenia genetic counseling for families, even in the absence of individually relevant genetic test results or professional genetics services. The findings support the integration of contemporary genetic counseling for families into the general management of schizophrenia in the community.
MeSH term(s)	Aged ; Clinical Protocols/standards ; Family/psychology ; Female ; Genetic Counseling/psychology ; Genetic Counseling/standards ; Genetic Predisposition to Disease ; Health Knowledge, Attitudes, Practice ; Humans ; Male ; Middle Aged ; Recurrence ; Schizophrenia/genetics ; Social Stigma ; Treatment Outcome
Language	English
Publishing date	2012-10-27
Publishing country	United States
Document type	Evaluation Study ; Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	439173-1
ISSN	1745-1701 ; 0586-7614
ISSN (online)	1745-1701
ISSN	0586-7614
DOI	10.1093/schbul/sbs124
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Article ; Online: Personal privacy, public benefits, and biobanks: a conjoint analysis of policy priorities and public perceptions.

Pullman, Daryl / Etchegary, Holly / Gallagher, Katherine / Hodgkinson, Kathleen / Keough, Montgomery / Morgan, David / Street, Catherine

Genetics in medicine : official journal of the American College of Medical Genetics

2012 Volume 14, Issue 2, Page(s) 229–235

Abstract: Purpose: To assess the public's perception of biobank research and the relative importance they place on concerns for privacy and confidentiality, when compared with other key variables when considering participation in biobank research.: Methods: ... ...

Abstract	Purpose: To assess the public's perception of biobank research and the relative importance they place on concerns for privacy and confidentiality, when compared with other key variables when considering participation in biobank research. Methods: Conjoint analysis of three key attributes (research focus, research beneficiary, and privacy and confidentiality) under conditions of either blanket or specific consent. Results: Although the majority of our participants described themselves as private individuals, they consistently ranked privacy and confidentiality as the least important of the variables they considered. The potential beneficiary of proposed research ranked the highest under conditions of both blanket and specific consent. When completing the conjoint task under conditions of blanket consent, participants tended to act more altruistically. Conclusion: The public tends to view biobanks as public goods designed primarily for public benefit. As such it tends to act altruistically with respect to the potential benefits that might accrue from research using biobanked samples. Participants expressed little concern about informational risks (i.e., privacy and confidentiality) should they choose to participate. The manner in which policy priorities are framed could impact participant value preferences with regard to a number of governance issues in biobanking.
MeSH term(s)	Adult ; Biological Specimen Banks/ethics ; Biomedical Research/ethics ; Community Participation/psychology ; Confidentiality ; Ethics Committees, Research ; Female ; Humans ; Male ; Middle Aged ; Public Opinion ; Public Policy ; Research Subjects/psychology
Language	English
Publishing date	2012-01-05
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	1455352-1
ISSN	1530-0366 ; 1098-3600
ISSN (online)	1530-0366
ISSN	1098-3600
DOI	10.1038/gim.0b013e31822e578f
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