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J Genet Couns. 2015 Oct;24(5):833-41. doi: 10.1007/s10897-014-9817-1. Epub 2015 Jan 17.

Association of Researcher Characteristics with Views on Return of Incidental Findings from Genomic Research.

Author information

1
Department of Pediatrics, Columbia University Medical Center, 1150 St. Nicholas Ave., Russ Berrie Pavilion, 6th Fl, Rm 620, New York, NY, 10032, USA. jw2500@columbia.edu.
2
Department of Pediatrics, Columbia University Medical Center, 1150 St. Nicholas Ave., Russ Berrie Pavilion, 6th Fl, Rm 620, New York, NY, 10032, USA.
3
Department of Biostatistics, Mailman School of Public Health, Columbia University, New York, NY, USA.
4
Department of Sociomedical Sciences, Mailman School of Public Health, Columbia University, New York, NY, USA.
5
Department of Psychiatry, Columbia University Medical Center and NY State Psychiatric Institute, New York, NY, USA.
6
Department of Pediatrics, Columbia University Medical Center, 1150 St. Nicholas Ave., Russ Berrie Pavilion, 6th Fl, Rm 620, New York, NY, 10032, USA. wkc15@columbia.edu.
7
Department of Medicine, Columbia University Medical Center, 1150 St. Nicholas Ave., Russ Berrie Pavilion, 6th Fl, Rm 620, 10032, New York, NY, USA. wkc15@columbia.edu.

Abstract

Whole exome/ genome sequencing (WES/WGS) is now commonly used in research and is increasingly used in clinical care to identify the genetic basis of rare and unknown diseases. The management of incidental findings (IFs) generated through these analyses is debated within the research community. To examine how views regarding genomic research IFs are associated with researcher characteristics and experiences, we surveyed genetic professionals and assessed the effect of professional background and experience on their opinions. Researchers who did not have clinical training, provide clinical care to research participants, or have prior experience returning research results were in general more inclined to offer return of IFs than their colleagues with these characteristics. Understanding this will be important to fully appreciate the impact that policies on return of genetic IFs could have on participants, researchers, and genomic research.

KEYWORDS:

Genetics research; Genomic results; Genomics; Incidental findings; Return of results; Secondary findings; Whole exome sequencing

PMID:
25592144
PMCID:
PMC4506262
DOI:
10.1007/s10897-014-9817-1
[Indexed for MEDLINE]
Free PMC Article

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