Journal article

Quality of life drives patients' preferences for secondary findings from genomic sequencing

Chloe Mighton, Lindsay Carlsson, Marc Clausen, Selina Casalino, Salma Shickh, Laura McCuaig, Esha Joshi, Seema Panchal, Kara Semotiuk, Karen Ott, Christine Elser, Andrea Eisen, Raymond H KiM, Jordan Lerner-Ellis, June C Carroll, Emily Glogowski, Kasmintan Schrader, Yvonne Bombard

European Journal of Human Genetics | NATURE PUBLISHING GROUP | Published : 2020

Abstract

There is growing impetus to include measures of personal utility, the nonmedical value of information, in addition to clinical utility in health technology assessment (HTA) of genomic tests such as genomic sequencing (GS). However, personal utility and clinical utility are challenging to define and measure. This study aimed to explore what drives patients' preferences for hypothetically learning medically actionable and non-medically actionable secondary findings (SF), capturing clinical and personal utility; this may inform development of measures to evaluate patient outcomes following return of SF. Semi-structured interviews were conducted with adults with a personal or family cancer histo..

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Grants

Awarded by Canadian Institutes of Health Research (CIHR)


Awarded by University of Toronto McLaughlin Center


Awarded by Research Training Center at St. Michael's Hospital, CIHR


Awarded by Canadian Center for Applied Research in Cancer Control (ARCC) - Canadian Cancer Society


Funding Acknowledgements

YB received funding for this study from Canadian Institutes of Health Research (CIHR, #333703), the University of Toronto McLaughlin Center (MC-2016-04) and a CIHR New Investigator Award. CM received support from the Research Training Center at St. Michael's Hospital, CIHR (FRN #160968, FRN GSD-164222) and a studentship from the Canadian Center for Applied Research in Cancer Control (ARCC) which receives core funding from the Canadian Cancer Society (Grant #2015-703549).