title: Association of Researcher Characteristics with Views on Return of Incidental Findings from Genomic Research.
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.
authors.affiliation: 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.
authors.forename: Julia
authors.initials: J
authors.lastname: Wynn
authors.affiliation: Department of Pediatrics, Columbia University Medical Center, 1150 St. Nicholas Ave., Russ Berrie Pavilion, 6th Fl, Rm 620, New York, NY, 10032, USA.
authors.forename: Josue
authors.initials: J
authors.lastname: Martinez
authors.affiliation: Department of Biostatistics, Mailman School of Public Health, Columbia University, New York, NY, USA.
authors.forename: Jimmy
authors.initials: J
authors.lastname: Duong
authors.affiliation: Department of Biostatistics, Mailman School of Public Health, Columbia University, New York, NY, USA.
authors.forename: Yuan
authors.initials: Y
authors.lastname: Zhang
authors.affiliation: Department of Sociomedical Sciences, Mailman School of Public Health, Columbia University, New York, NY, USA.
authors.forename: Jo
authors.initials: J
authors.lastname: Phelan
authors.affiliation: Department of Psychiatry, Columbia University Medical Center and NY State Psychiatric Institute, New York, NY, USA.
authors.forename: Abby
authors.initials: A
authors.lastname: Fyer
authors.affiliation: Department of Psychiatry, Columbia University Medical Center and NY State Psychiatric Institute, New York, NY, USA.
authors.forename: Robert
authors.initials: R
authors.lastname: Klitzman
authors.affiliation: Department of Psychiatry, Columbia University Medical Center and NY State Psychiatric Institute, New York, NY, USA.
authors.forename: Paul S
authors.initials: PS
authors.lastname: Appelbaum
authors.affiliation: 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.|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.
authors.forename: Wendy K
authors.initials: WK
authors.lastname: Chung
mesh_terms: D001291:Attitude of Health Personnel; D015894:Genome, Human; D023281:Genomics; D006801:Humans; D033162:Incidental Findings; D008297:Male; D011361:Professional Competence / Q000706:statistics & numerical data; D012108:Research Personnel / Q000523:psychology*; D011795:Surveys and Questionnaires
keywords: Genetics research; Genomic results; Genomics; Incidental findings; Return of results; Secondary findings; Whole exome sequencing