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Article ; Online: Ethical, Legal, and Social Issues (ELSI) in Clinical Genetics Research.

Pullman, Daryl / Etchegary, Holly

Methods in molecular biology (Clifton, N.J.)

2021 Volume 2249, Page(s) 65–82

Abstract: ELSI (Ethical, Legal, and Social Issues) is a widely used acronym in the bioethics literature that encompasses a broad range of research examining the various impacts of science and technology on society. In Canada, ... ...

Abstract	ELSI (Ethical, Legal, and Social Issues) is a widely used acronym in the bioethics literature that encompasses a broad range of research examining the various impacts of science and technology on society. In Canada, GE
MeSH term(s)	Canada ; Ethics, Research ; Genetic Research/ethics ; Genetic Research/legislation & jurisprudence ; Genome, Human ; Genomics/ethics ; Genomics/legislation & jurisprudence ; Humans ; Public Policy ; Publications/ethics ; Publications/legislation & jurisprudence ; Translational Medical Research/ethics ; Translational Medical Research/legislation & jurisprudence
Language	English
Publishing date	2021-04-19
Publishing country	United States
Document type	Journal Article
ISSN	1940-6029
ISSN (online)	1940-6029
DOI	10.1007/978-1-0716-1138-8_5
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Article ; Online: Public attitudes towards genomic data sharing: results from a provincial online survey in Canada.

Etchegary, Holly / Darmonkov, Georgia / Simmonds, Charlene / Pullman, Daryl / Rahman, Proton

BMC medical ethics

2023 Volume 24, Issue 1, Page(s) 81

Abstract: Background: While genomic data sharing can facilitate important health research and discovery benefits, these must be balanced against potential privacy risks and harms to individuals. Understanding public attitudes and perspectives on data sharing is ... ...

Abstract	Background: While genomic data sharing can facilitate important health research and discovery benefits, these must be balanced against potential privacy risks and harms to individuals. Understanding public attitudes and perspectives on data sharing is important given these potential risks and to inform genomic research and policy that aligns with public preferences and needs. Methods: A cross sectional online survey measured attitudes towards genomic data sharing among members of the general public in an Eastern Canadian province. Results: Results showed a moderate comfort level with sharing genomic data, usually into restricted scientific databases with controlled access. Much lower comfort levels were observed for sharing data into open or publicly accessible databases. While respondents largely approved of sharing genomic data for health research permitted by a research ethics board, many general public members were concerned with who would have access to their data, with higher rates of approval for access from clinical or academic actors, but much more limited approval of access from commercial entities or governments. Prior knowledge about sequencing and about research ethics boards were both related to data sharing attitudes. Conclusions: With evolving regulations and guidelines for genomics research and data sharing, it is important to consider the perspectives of participants most impacted by these changes. Participant information materials and informed consent documents must be explicit about the safeguards in place to protect genomic data and the policies governing the sharing of data. Increased public awareness of the role of research ethics boards and of the need for genomic data sharing more broadly is also needed.
MeSH term(s)	Humans ; Cross-Sectional Studies ; Canada ; Genomics ; Information Dissemination ; Surveys and Questionnaires
Language	English
Publishing date	2023-10-07
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2041552-7
ISSN	1472-6939 ; 1472-6939
ISSN (online)	1472-6939
ISSN	1472-6939
DOI	10.1186/s12910-023-00967-0
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Article: Public interest in unexpected genomic findings: a survey study identifying aspects of sequencing attitudes that influence preferences.

Etchegary, Holly / Pullman, Daryl / Simmonds, Charlene / Rahman, Proton

Journal of community genetics

2022 Volume 13, Issue 2, Page(s) 235–245

Abstract: We describe public preferences for unexpected genomic findings and explore predictors of preferences using an online survey in an Eastern Canadian province. Items measuring attitudes toward features of unexpected findings and genomic sequencing concerns ... ...

Abstract	We describe public preferences for unexpected genomic findings and explore predictors of preferences using an online survey in an Eastern Canadian province. Items measuring attitudes toward features of unexpected findings and genomic sequencing concerns were entered in logistic regression models predicting interest in unexpected findings. Very high levels of interest were observed in unexpected findings for treatable disorders and carrier results, with lesser interest in unexpected findings for non-treatable disorders and unclassified variants. Respondents who endorsed items measuring features of patient control and choice over their genomic data and testing options were 3-5 times more likely to be very interested in receiving unexpected findings. Respondents with high genomic sequencing concerns were less interested in the return of any unexpected result. Self-reported history of a genetic condition was significantly related to interest in receiving most categories of unexpected genomic information, while prior use of direct-to-consumer testing was significantly related only to interest in the return of unexpected genomic findings for disorders not currently treatable. Findings highlight the need for specific elements of information and transparency regarding the return of unexpected findings and can inform the development of patient-centered materials and return of results policies.
Language	English
Publishing date	2022-01-21
Publishing country	Germany
Document type	Journal Article
ZDB-ID	2543127-4
ISSN	1868-6001 ; 1868-310X
ISSN (online)	1868-6001
ISSN	1868-310X
DOI	10.1007/s12687-022-00577-0
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Article: Public attitudes toward genetic risk testing and its role in healthcare.

Etchegary, Holly

Personalized medicine

2014 Volume 11, Issue 5, Page(s) 509–522

Abstract: Developments in genomics continue to increase the number of disorders for which genetic testing is available, whether in the primary healthcare system, through direct-to-consumer testing, or as part of expanded newborn screening panels. This paper ... ...

Abstract	Developments in genomics continue to increase the number of disorders for which genetic testing is available, whether in the primary healthcare system, through direct-to-consumer testing, or as part of expanded newborn screening panels. This paper reviews a robust literature on public attitudes toward genetics and genetic testing. In general, attitudes are positive about genetic research and new genomic technologies, with majorities indicating an interest in genetic testing. However, complex beliefs comprise the public's thinking about genetics. Attitudes are driven by beliefs about the type of genetic research, the personal and clinical utility of tests, and the area of genetics in which testing is applied. Limitations of current research are noted and suggestions made for future research.
Language	English
Publishing date	2014-07
Publishing country	England
Document type	Journal Article
ZDB-ID	2299146-3
ISSN	1744-828X ; 1741-0541
ISSN (online)	1744-828X
ISSN	1741-0541
DOI	10.2217/pme.14.35
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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

Current oncology (Toronto, Ont.)

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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Article ; Online: Specialty Care and Counselling about Hereditary Cancer Risk Improves Adherence to Cancer Screening and Prevention in Newfoundland and Labrador Patients with

Roebothan, Aimee / Smith, Kerri N / Seal, Melanie / Etchegary, Holly / Dawson, Lesa

Current oncology (Toronto, Ont.)

2023 Volume 30, Issue 10, Page(s) 9367–9381

Abstract: Pathogenic variants (PVs) ... ...

Abstract	Pathogenic variants (PVs) in
MeSH term(s)	Humans ; Female ; Breast Neoplasms/diagnosis ; Breast Neoplasms/genetics ; Breast Neoplasms/prevention & control ; BRCA1 Protein/genetics ; Mastectomy ; Retrospective Studies ; BRCA2 Protein/genetics ; Early Detection of Cancer ; Genetic Predisposition to Disease ; Newfoundland and Labrador ; Canada ; Counseling
Chemical Substances	BRCA1 protein, human ; BRCA1 Protein ; BRCA2 protein, human ; BRCA2 Protein
Language	English
Publishing date	2023-10-22
Publishing country	Switzerland
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	1236972-x
ISSN	1718-7729 ; 1198-0052
ISSN (online)	1718-7729
ISSN	1198-0052
DOI	10.3390/curroncol30100678
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Article: Public engagement with genomic medicine: a summary of town hall discussions.

Etchegary, Holly / Winsor, Mercy / Power, Angela / Simmonds, Charlene

Journal of community genetics

2020 Volume 12, Issue 1, Page(s) 27–35

Abstract: Engaging with the public for their input about genomic medicine is critical before it is implemented into routine healthcare practice. In order to inform discussion and planning for the introduction of genome sequencing into clinical care in an Eastern ... ...

Abstract	Engaging with the public for their input about genomic medicine is critical before it is implemented into routine healthcare practice. In order to inform discussion and planning for the introduction of genome sequencing into clinical care in an Eastern Canadian province, we implemented a program of public engagement activities. Here, we report a qualitative summary of two town hall discussions utilizing a hybrid information-consultation approach with 20 residents of the province of Newfoundland and Labrador, Canada. Discussion revealed largely positive attitudes towards genomic medicine; however, critical reflection around informed consent models, the return of sequencing findings, and access to qualified healthcare professionals revealed numerous public concerns. Public support will be important to realize the potential benefits of genomics and precision medicine to health outcomes. Our findings highlight public concerns that must be addressed in educational and informed consent documents related to sequencing. Town hall attendees endorsed ongoing public education and awareness-building initiatives which could help foster transparency and trust as genomics is integrated into healthcare systems.
Language	English
Publishing date	2020-08-31
Publishing country	Germany
Document type	Journal Article
ZDB-ID	2543127-4
ISSN	1868-6001 ; 1868-310X
ISSN (online)	1868-6001
ISSN	1868-310X
DOI	10.1007/s12687-020-00485-1
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Article ; Online: 'I put it on the back burner most days': Living with chronic risk.

Etchegary, Holly

Health (London, England : 1997)

2011 Volume 15, Issue 6, Page(s) 633–649

Abstract: Continued advances in genetics and genomics research suggest that more and more people will be identified 'at risk' for common diseases such as cancer, heart disease or diabetes. A perspective for understanding how people adapt to and manage inherited ... ...

Abstract	Continued advances in genetics and genomics research suggest that more and more people will be identified 'at risk' for common diseases such as cancer, heart disease or diabetes. A perspective for understanding how people adapt to and manage inherited risk, as well as identifying differences in individual response to DNA information would be useful in the planning and provision of genetics health services. This article adopts a 'chronic risk' perspective to explore living at risk of Huntington disease (HD), a fatal genetic disorder. Qualitative data analysis suggested two broad themes that illustrated living with chronic risk: (1) biographical disruption, including threats to self-identity and changes to relationships with others; and (2) zones of relevance, the conditions under which risk is or is not salient. Findings are relevant to the provision of genetics health services, particularly in follow-up support to individuals at risk for HD and their families.
MeSH term(s)	Adaptation, Psychological ; Adult ; Aged ; Canada ; Chronic Disease ; Cohort Studies ; Female ; Genetic Predisposition to Disease/psychology ; Genetic Testing ; Humans ; Huntington Disease/diagnosis ; Huntington Disease/genetics ; Huntington Disease/psychology ; Interviews as Topic ; Male ; Middle Aged ; Neoplasms/genetics ; Neoplasms/psychology ; Quality of Life ; Risk Assessment ; Stress, Psychological ; Time Factors ; Young Adult
Language	English
Publishing date	2011-11
Publishing country	England
Document type	Comparative Study ; Journal Article
ZDB-ID	2034459-4
ISSN	1461-7196 ; 1363-4593
ISSN (online)	1461-7196
ISSN	1363-4593
DOI	10.1177/1363459310364162
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Article ; Online: Healthcare experiences of families affected by Huntington disease: need for improved care.

Etchegary, Holly

Chronic illness

2011 Volume 7, Issue 3, Page(s) 225–238

Abstract: Objectives: To explore the healthcare experiences of families affected by Huntington disease (HD), a fatal neurodegenerative genetic disorder, and elicit their suggestions for improvement in the quality of care provided to them.: Methods: 24 semi- ... ...

Abstract	Objectives: To explore the healthcare experiences of families affected by Huntington disease (HD), a fatal neurodegenerative genetic disorder, and elicit their suggestions for improvement in the quality of care provided to them. Methods: 24 semi-structured interviews were completed with members of families affected by HD in Eastern Canada. The sample was chosen to reflect a wide range of experiences with HD (e.g. patients, caregivers, family members at risk, but asymptomatic). Results: Complex needs for healthcare services and emotional supports were found. Participants expressed frustration at the lack of knowledge about HD displayed by their family physicians. They described numerous difficulties accessing appropriate healthcare and other supports, and anticipated access difficulties in the future. Participants offered several suggestions to improve the quality of care to their families, including better education of healthcare professionals about the complex nature of HD and the provision of regular follow-up support. Discussion: Health service planners and policy makers must recognize that HD is a debilitating, complicated illness requiring a high degree of care. Sustained follow-up support from knowledgeable healthcare professionals is required from the initial discovery of HD in the family, throughout a lengthy disease trajectory that normally ends with institutionalization.
MeSH term(s)	Adult ; Aged ; Clinical Competence ; Female ; Genetic Testing ; Health Knowledge, Attitudes, Practice ; Humans ; Huntington Disease/genetics ; Huntington Disease/psychology ; Huntington Disease/therapy ; Interviews as Topic ; Male ; Middle Aged ; Newfoundland and Labrador ; Patient Satisfaction ; Physician-Patient Relations ; Quality of Health Care ; Young Adult
Language	English
Publishing date	2011-09
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2191311-0
ISSN	1745-9206 ; 1742-3953
ISSN (online)	1745-9206
ISSN	1742-3953
DOI	10.1177/1742395311403637
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Article ; Online: Identifying Aspects of Public Attitudes Toward Whole Genome Sequencing to Inform the Integration of Genomics into Care.

Etchegary, Holly / Pullman, Daryl / Simmonds, Charlene / Rabie, Zoha / Rahman, Proton

Public health genomics

2021 Volume 24, Issue 5-6, Page(s) 229–240

Abstract: Introduction: The growth of global sequencing initiatives and commercial genomic test offerings suggests the public will increasingly be confronted with decisions about sequencing. Understanding public attitudes can assist efforts to integrate ... ...

Abstract	Introduction: The growth of global sequencing initiatives and commercial genomic test offerings suggests the public will increasingly be confronted with decisions about sequencing. Understanding public attitudes can assist efforts to integrate sequencing into care and inform the development of public education and outreach strategies. Methods: A 48-item online survey was advertised on Facebook in Eastern Canada and hosted on SurveyMonkey in late 2018. The survey measured public interest in whole genome sequencing and attitudes toward various aspects of sequencing using vignettes, scaled, and open-ended items. Results: While interest in sequencing was high, critical attitudes were observed. In particular, items measuring features of patient control and choice regarding genomic data were strongly endorsed by respondents. Majority wanted to specify upfront how their data could be used, retain the ability to withdraw their sample at a later date, sign a written consent form, and speak to a genetic counselor prior to sequencing. Concerns about privacy and unauthorized access to data were frequently observed. Education level was the sociodemographic variable most often related to attitude statements such that those with higher levels of education generally displayed more critical attitudes. Conclusions: Attitudes identified here could be used to inform the development of implementation strategies for genomic medicine. Findings suggest health systems must address patient concerns about privacy, consent practices, and the strong desire to control what happens to their genomic data through public outreach and education. Specific oversight procedures and policies that are clearly communicated to the public will be required.
MeSH term(s)	Attitude ; Genomics/methods ; Humans ; Public Opinion ; Surveys and Questionnaires ; Whole Genome Sequencing
Language	English
Publishing date	2021-05-26
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	10.1159/000515952
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