Attitudes of Canadian researchers toward the return to participants of incidental and targeted genomic findings obtained in a pediatric research setting.
OBJECTIVE
The purpose of this study was to explore the attitudes of genomics researchers in a pediatric setting in the context of regulatory guidance recommending the disclosure of clinically significant research findings.


METHODS
A validated 32-item questionnaire was sent to 107 researchers with two large-scale projects (the Canadian Pediatric Cancer Genome Consortium and the Finding of Rare Genes Canada Consortium). We examined researchers' attitudes toward obligations to offer genomic research results (including if the participant was deceased, a relative, or a child), influence of the certainty/severity of the condition on this obligation, and personal experiences.


RESULTS
Of the 107 researchers, 74 (69%) responded. Researchers did not feel a strong responsibility to look for meaningful incidental results in the research genomic data set (n = 27, 37%). However, once identified, they felt participants had a strong right to receive them, irrespective of being incidental (n = 50, 68%) or primary targets (n = 64, 87%). There was a high degree of support for informing siblings of genomic results (n = 46, 62%), especially for treatable conditions (n = 56, 76%). Less than half of the participants indicated that their research ethics board required an offer of results (n = 34, 46%) or provided a detailed process (n = 16, 22%).


CONCLUSIONS
Researchers strongly support the offer of targeted and incidental genomic research results to participants. Greater regulatory guidance is needed for a consistent approach.
Department of Pediatrics, IWK Health Centre and Dalhousie University, Halifax, Nova Scotia, Canada. conrad.fernandez@iwk.nshealth.ca
Conrad V
CV
Fernandez
Caron
C
Strahlendorf
Denise
D
Avard
Bartha M
BM
Knoppers
Colleen
C
O'Connell
Eric
E
Bouffet
David
D
Malkin
Nada
N
Jabado
Kym
K
Boycott
Poul H
PH
Sorensen
D000328:Adult; D001290:Attitude; D002170:Canada; D002648:Child; D003625:Data Collection; D030881:Disclosure / Q000941:ethics; D032984:Ethics, Research; D036281:Genetic Research / Q000941:ethics*; D006801:Humans; D033162:Incidental Findings; D008875:Middle Aged; D012108:Research Personnel / Q000941:ethics*; D035781:Siblings; D011795:Surveys and Questionnaires; D055815:Young Adult