Whether, when, how, and how much? General public's and cancer patients' views about the disclosure of genomic secondary findings.

Genomics
Canada Confidentiality Disclosure Focus groups Genetic testing Genome sequencing Genomics Neoplasm Qualitative research Secondary findings

Journal

BMC medical genomics
ISSN: 1755-8794
Titre abrégé: BMC Med Genomics
Pays: England
ID NLM: 101319628

Informations de publication

Date de publication:
26 06 2021
Historique:
received: 08 02 2021
accepted: 16 06 2021
entrez: 27 6 2021
pubmed: 28 6 2021
medline: 20 1 2022
Statut: epublish

Résumé

Data on the modalities of disclosing genomic secondary findings (SFs) remain scarce. We explore cancer patients' and the general public's perspectives about disclosing genomic SFs and the modalities of such disclosure. Sixty-one cancer patients (n = 29) and members of the public (n = 32) participated in eight focus groups in Montreal and Quebec City, Canada. They were asked to provide their perspectives of five fictitious vignettes related to medically actionable and non-actionable SFs. Two researchers used a codification framework to conduct a thematic content analysis of the group discussion transcripts. Cancer patients and members of the public were open to receive genomic SFs, considering their potential clinical and personal utility. They believed that the right to know or not and share or not such findings should remain the patient's decision. They thought that the disclosure of SFs should be made mainly in person by the prescribing clinician. Maintaining confidentiality when so requested and preventing genetic discrimination were considered essential. Participants in this study welcomed the prospect of disclosing genomic SFs, as long as the right to choose to know or not to know is preserved. They called for the development of policies and practice guidelines that aim to protect genetic information confidentiality as well as the autonomy, physical and psychosocial wellbeing of patients and families.

Sections du résumé

BACKGROUND
Data on the modalities of disclosing genomic secondary findings (SFs) remain scarce. We explore cancer patients' and the general public's perspectives about disclosing genomic SFs and the modalities of such disclosure.
METHODS
Sixty-one cancer patients (n = 29) and members of the public (n = 32) participated in eight focus groups in Montreal and Quebec City, Canada. They were asked to provide their perspectives of five fictitious vignettes related to medically actionable and non-actionable SFs. Two researchers used a codification framework to conduct a thematic content analysis of the group discussion transcripts.
RESULTS
Cancer patients and members of the public were open to receive genomic SFs, considering their potential clinical and personal utility. They believed that the right to know or not and share or not such findings should remain the patient's decision. They thought that the disclosure of SFs should be made mainly in person by the prescribing clinician. Maintaining confidentiality when so requested and preventing genetic discrimination were considered essential.
CONCLUSION
Participants in this study welcomed the prospect of disclosing genomic SFs, as long as the right to choose to know or not to know is preserved. They called for the development of policies and practice guidelines that aim to protect genetic information confidentiality as well as the autonomy, physical and psychosocial wellbeing of patients and families.

Identifiants

DOI: 10.1186/s12920-021-01016-8 PMID: 34174888 PMC: PMC8236159
pubmed: 34174888
doi: 10.1186/s12920-021-01016-8
pii: 10.1186/s12920-021-01016-8
pmc: PMC8236159
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

167

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Auteurs

Jude Emmanuel Cléophat (JE)

Faculty of Pharmacy, Laval University, Quebec City, QC, Canada.
Oncology Division, Research Center of the CHU de Québec-Laval University, Hôpital du Saint-Sacrement, 1050, chemin Sainte-Foy, Québec, QC, G1S 4L8, Canada.

Michel Dorval (M)

Faculty of Pharmacy, Laval University, Quebec City, QC, Canada.
Oncology Division, Research Center of the CHU de Québec-Laval University, Hôpital du Saint-Sacrement, 1050, chemin Sainte-Foy, Québec, QC, G1S 4L8, Canada.
Laval University Cancer Research Center, Quebec City, QC, Canada.
Research Center of the Chaudière-Appalaches Integrated Center for Health and Social Services, Lévis, QC, Canada.

Zaki El Haffaf (Z)

Division of Genetics, Department of Medicine, Hospital Center of the University of Montreal, Montreal, QC, Canada.
Oncology Division, Research Center of the Hospital Center of the University of Montreal, Montreal, QC, Canada.

Jocelyne Chiquette (J)

Oncology Division, Research Center of the CHU de Québec-Laval University, Hôpital du Saint-Sacrement, 1050, chemin Sainte-Foy, Québec, QC, G1S 4L8, Canada.
Department of Family Medicine and Emergency Medicine, Faculty of Medicine, Laval University, Quebec City, QC, Canada.

Stephanie Collins (S)

Faculty of Pharmacy, University of Montreal, Montreal, QC, Canada.

Benjamin Malo (B)

Infectious and Immune Diseases Division, Research center of the Quebec City University Hospital, Quebec City, QC, Canada.

Vincent Fradet (V)

Oncology Division, Research Center of the CHU de Québec-Laval University, Hôpital du Saint-Sacrement, 1050, chemin Sainte-Foy, Québec, QC, G1S 4L8, Canada.
Laval University Cancer Research Center, Quebec City, QC, Canada.
Department of Surgery, Faculty of Medicine, Laval University, Quebec City, QC, Canada.

Yann Joly (Y)

Center of Genomics and Policy, McGill University, Montreal, QC, Canada.

Hermann Nabi (H)

Oncology Division, Research Center of the CHU de Québec-Laval University, Hôpital du Saint-Sacrement, 1050, chemin Sainte-Foy, Québec, QC, G1S 4L8, Canada. Hermann.Nabi@crchudequebec.ulaval.ca.
Laval University Cancer Research Center, Quebec City, QC, Canada. Hermann.Nabi@crchudequebec.ulaval.ca.
Department of Social and Preventive Medicine, Faculty of Medicine, Laval University, Quebec City, QC, Canada. Hermann.Nabi@crchudequebec.ulaval.ca.

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Classifications MeSH

questionsmedicales.fr › Disciplines des sciences naturelles › Disciplines des sciences biologiques › Biologie › Génétique › Génomique › Whether, when, how, and how much? General...