Exploring Canadian genetic healthcare providers’ perspectives on sponsored genetic testing

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dc.contributor.authorHirjikaka, Daena
dc.contributor.examiningcommitteeBombard, Yvonne (Biochemistry and Medical Genetics)
dc.contributor.examiningcommitteeHalas, Gayle (Dentistry)
dc.contributor.examiningcommitteeAgatep, Ron (Biochemistry and Medical Genetics)
dc.contributor.supervisorCarriles Landry, Claudia
dc.date.accessioned2024-09-03T18:04:26Z
dc.date.available2024-09-03T18:04:26Z
dc.date.issued2024-06-28
dc.date.submitted2024-08-01T20:56:00Zen_US
dc.date.submitted2024-09-03T15:22:18Zen_US
dc.degree.disciplineBiochemistry and Medical Genetics
dc.degree.levelMaster of Science (M.Sc.)
dc.description.abstractSponsored genetic testing (SGT) programs consist of partnerships between clinical genetic testing laboratories and third-party organizations (generally biopharmaceutical companies) to offer genetic testing free of charge to a patient or healthcare system. To date, there is no research surrounding the use of SGT in Canada, or how it is perceived by professionals. This study aims to learn about Canadian genetic healthcare providers’ (CGHPs’) views on SGT, along with their perceived benefits, limitations, and impacts of SGT within the Canadian healthcare system. Certified genetic counsellors, medical geneticists, and laboratory geneticists practicing in Canada were invited to participate in semi-structed interviews. Interviews were recorded over Zoom, transcribed verbatim, and analyzed using interpretive description and thematic analysis. Codes were created inductively, and themes emerged across cases to capture participants’ perceptions. Interviews were conducted with 18 CGHPs across six provinces. Some participants were ambivalent about SGT, and others either agreed or disagreed with its use in practice. Perspectives were categorized into four main themes: 1) adequate transparency surrounding data sharing 2) the desire for a workaround to improve access 3) consideration of budgets within a publicly funded healthcare system and 4) perspectives of non-genetics providers using SGT. Proponents noted that transparency regarding data sharing between the genetic testing laboratories and third-party companies was adequate, that SGT could provide increased access to genetic testing, and that SGT can help advocate for enhanced provincial funding of genetic services. Skeptics of SGT mentioned a lack of transparency regarding how patient data is shared and used, that a public system should be able to cover all patients who require genetic testing, and that there is a responsibility to consider how externally funded testing could be detrimental to future budget considerations. All participants had considerations for their non-genetics colleagues ordering SGT. This exploratory study offers insights surrounding CGHPs’ views on SGT. It highlights the benefits and limitations regarding the use of SGT in Canada, along with a unique perspective into the challenges and nuances of using SGT within a publicly funded healthcare system.
dc.description.noteOctober 2024
dc.description.sponsorshipUniversity of Manitoba
dc.identifier.urihttp://hdl.handle.net/1993/38493
dc.language.isoeng
dc.rightsopen accessen_US
dc.subjectgenetic testing
dc.subjectsponsored genetic testing
dc.subjectgenomics practice
dc.subjectgenetic counselling
dc.titleExploring Canadian genetic healthcare providers’ perspectives on sponsored genetic testing
dc.typemaster thesisen_US
local.subject.manitobano
oaire.awardTitleCanada Graduate Scholarships - Master’s Program
project.funder.identifierhttps://doi.org/10.13039/501100000024
project.funder.nameCanadian Institutes of Health Research
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