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Past Fellow |
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Yvonne Bombard |
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| HCTP Alumni
(PD Fellow 2009 - 2011) |
| bombardy@mskcc.org |
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| Yvonne is a Post-Doctoral Fellow at Yale University (Public Health) and Memorial Sloan Kettering Cancer Center in New York (Biostatistics & Epidemiology). |
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| Department: |
Institute of Health Policy, Management and Evaluation |
| Institution: |
University of Toronto |
| HCTP Mentors: |
Fiona A. Miller, Les Levin |
| Seminar: |
Informing Evidence-Based Policy on Expanded Newborn Screening: Engaging Stakeholders on the Provision and Governance of Newborn Screening |
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| Education |
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Bachelor’s Degree in Biology (McGill University)
Doctorate Degree in Interdisciplinary Studies - Medical Genetics, Genetic Counselling, Bioethics & Social Science (University of British Columbia) |
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| Disciplines |
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| Public health genomics, health policy, applied health services research, medical genetics, bioethics & social science |
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| Title of Project |
| Informing evidence-based policy on expanded newborn screening: Engaging stakeholders on the provision and governance of newborn screening |
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| Research Problem/Issue |
| Historically, newborn screening programs identified serious conditions where early detection and urgent pre-symptomatic treatment were necessary to avert clinical harm. Today newborn screening continues to operate as a mandatory or implied-consent program justified on the basis of anticipated health benefits for infants. Due to increased technological capacity, newborn screening is expanding - in Canada and around the world - allowing the early detection of increasing numbers of primarily genetic conditions, including those for which treatment is not established and others which generate incidental results. In consequence, expanded newborn screening has been accompanied by complex and contested ethical and policy dilemmas regarding: (1) the relevance of increased parental discretion; (2) the types of conditions to be screened (e.g., treatable or not), (3) whether and how incidental results (i.e., carrier status, benign variants) should be disclosed, and (4) whether and how long infant blood samples generated should be stored and made available for research. |
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| Research Plan |
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As inherent policy issue, these questions make it essential to engage the relevant stakeholders regarding these complex health service decisions. The relevant stakeholders include: parents whose infants are being screened, health providers who assist in their care and citizens who support these public health services.
Using deliberative focus groups and a conjoint analysis survey on a representative sample, both in depth and generalizable insight from stakeholders will be generated on their values, preferences and the necessary trade-offs they make about the ends and means of newborn screening. |
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| Knowledge Translation
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| Public engagement methodology can be considered an integrated form of KT since the deliberative focus group methodology used in this study involves a direct interaction between researchers and potential users. In addition, the research findings will be disseminated in the academic realm as well as to the Ontario Advisory Committee on Newborn and Childhood Screening, the latter of which advise the Ministry regarding the provision and governance of Ontario’s Newborn Screening Program. |
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Strategic Initiative |
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